Biomedical Treatments [Archive] - BrainTalk Communities

milivica

09-30-2007, 05:18 PM

Gee I forgot, I went to see another DAN! doc after that, Dr. Usman at Pfeiffer Treatment Center. It was very disappointing, I didn't really feel it was personalized to my son, took me years to pay off the fee for all these tests that are not guaranteed to be accurate. After the first time we saw her, myriads of supplements were purchased per Pfeiffer, I never really understood how it all worked, Vince was taking 30+ pills per day. I wondered how I'd ever know what worked and what didn't. Finally, after about 3 months, with his rage worse than ever, I quit - he went inpatient, at that point he had dragged our then 5 year old out of bed nightly, to threaten to kill all of us, including her.

In addition, Dr. Usman just sort of dropped us after the first visit, Pfeiffer didn't know if she'd be back or when, and so it was like, "well, you don't have a doctor anymore too bad" like they wouldn't switch to any other doc, yet couldn't say when she'd be back. I understand she had a terrible personal tragedy, her own daughter had passed away from an asthma attack I believe I was told. But was it even true, I just don't know what to believe anymore. And though if it were true, I feel deeply for her, does that mean it's ok for Pfeiffer to leave my child hanging? They said the nurses could answer all my questions, and though yes they did try, getting through was a nightmare, getting called back was a nightmare, and I never did understand it, I tried, tried to believe what I was told, tried to believe 30+ pills a day for a 7 year old was ok, but it never made sense to me and I never saw a lick of progress - though I surely tried to! Oh, he burped, that's progress....oh he farted really loud, I think the supplements are working. Really desperate times.

I would really hesitate to go biomedical again because of the years I spent expending my joy and turning it into despair. Both times, we went, got dropped after the first time - though the fee did not get dropped. It was $1,500, I don't even remember how many years we were paying that off. It was very depressing, it seemed everyone that went there on the spectrum had heavy metals and pyroluria and malabsorption - like I heard the same stories from everyone.

So, as you can hear, trying to find treatment for autism has been far more traumatizing than autism itself.

Now I do my own dietary interventions, right or wrong. If I can't grow it or kill it, we don't eat it - that's the basic diet. You can't grow or kill a cheeto or hot pocket. For lunch we had meat, potatoes baked in olive oil and basil from my window sill and fresh garlic, corn, salad including the dandelion greens in our yard with flax oil and olive oil/vinegar. Not the best, but not Mac-N-Cheese with hot dogs, which used to be like a staple around here years ago. We avoid dairy, humans don't process dairy like calves. That's about it. Did gfcf for 3 1/2 years though. I would like to increase omega oils and probiotics, that's something I've slacked off on.

Just talking about biomedical intervention it makes me tired, weary. It seems like if there was a quack or Murphy's Law situation out there, I found it. So while I agree with biomedical intervention, I don't do it, cause I don't know who I could go to that would be knowledgible and not dump us after the first costly appointment.

JungleWoman

09-30-2007, 06:18 PM

I have just seen a straight up naturopathic doctor with Aaron. She wants Aaron to use this enzyme therapy called "spectrum awakening". Its been rough getting him to take it! She has been EXTREMELY patient with us and doesnt push us to buy loads of things we dont have a direct need for. In fact, she took us to her medicinary in her office and said "Whatever you can find cheaper elsewhere, you go for it" *I worked in the natural foods section at the local grocery store--- she carried a lot of the same brands we did and she carried them cheaper!!*

I have loved the compassion I've gotten from the ND's we've worked with. The one we saw in Portland was a bit more into the 'try this, try this', and his fees were a bit more expensive, but not to the extent I see a lot of DAN! doctors doing.

Oh, and both ND's had a sliding scale to work with us.

milivica

09-30-2007, 11:19 PM

I hope I didn't sound down on biomedical treatments, I think if there's a medical issue it needs medical treatment, for sure.

I just had a bad experience with a doctor, then another, followed by 11 years of more bad experiences :cool:

JungleWoman

09-30-2007, 11:58 PM

I keep getting the bad experience with the MDs over the NDs--- its finally starting to look a little brighter. :)

MitsyG

10-01-2007, 12:44 AM

It is very unfortunate that biomeds don't work for all. I wish it did...

milivica

10-01-2007, 01:15 AM

I believe with a competent doctor such as your son had, darn near 100% of our kids would benefit from biomedical intervention.

I think it's wonderful your son gained so much from it, please don't take my sour puss attitude about the docs I came across, as a sour puss attitude about biomedical treatments.

MitsyG

10-01-2007, 02:29 AM

Hey, it is perfectly okay, and understandable for you to feel that way. I certainly don't blame you. I have had some not so great experiances myself. Having a child with Autism is hard enough, then you get some moron that doesn't know his back-end from a whole in the ground. Greed runs everywhere, not just in the reg doc community but everywhere, that is the problem. So, many of the Doctors have forgotten why they went into medicine to begin with, to help people, now it is all about the love of money. It is so sad...How old is your child with Autism, did you ever try detox or do the yeast eradication?

Mitsy

milivica

10-01-2007, 02:41 AM

He's 11 now, 12 come November.

The first thing I did, was try probiotics. They did seem to help his poop no longer stink insanely bad and made it a bit more firm. Though it pretty much was explosive yellow fat globuals until he was 7 - which the ped. GI doc said, "well that's normal for 'him', he's got autism". He said the same thing when a hunk of pineapple was next to a hunk of chicken in his poop...I said how can that be, pineapple has bromein for pete sakes...same answer, "that's normal for 'him'".

I wanted to shove my foot up his arse then when he screamed say, "well, that must be normal for you, don't worry"

Then we went gfcf and I swore it helped him speak, did not help the behaviors though. I was gfcf with him and the family for 3 1/2 years, we couldn't afford any of the fancy foods, so I was squeezing almond milk through a t-shirt, the whole shot. Imagine hillbillies making moonshine, that was me making gfcf foods, lol.

Eventually, I got 'off' the whole biomedical thing. And reading your post, and Kristens, as soon as I get some legal stuff done (long story, nightmare last year with school) I do want to jump back into the biomedical thing. But more informed, and with a doc someone can swear by and recommend like I do my RDI consultant.

Vince is ADHD big time, if removing dyes and sugars is all I have to do, that is easier than the alternative, no one knowing what I can do.

Geez I'm sure I tried more....OH just for kicks, I will be giving him cilantro for a few days on and off, just to see if anything happens, if he's any calmer or clearer....cilantro chelates mercury. I take it myself a few days a month so my period is half as long, and half as heavy. Wonderful stuff but tastes like feet. Ew.

From Pfeiffer, I couldn't tell you the list of supplements we had to put him on, I just remember it was over 30 pills a day. It just didn't seem right, we did give it our all for a few months, but could not continue further when he had to be inpatient evaluated.

So, that will be an avenue I will want to go down again. For now, I put flax oil on salads, buy activa till I get the probiotics, and am trying to eat the kind of foods and prepare them the kinds of ways my ma did.

Woah getting sleepy here...better go!

MitsyG

10-01-2007, 12:16 PM

If you were on the gfcf diet for 3/12 years and it didn't help, then I don't know that I would go back on that. Hey, I like cilantro to, in food of course lol :). Well, something that you can get from a reg doc is a anti-fungal like Nizoral to do yeast eradication. This is actually a huge thing for many many kids on the spec. They have reports of severe kids that just sit in a corner all day that do eradication, then will go and play a game with their sister, something that they had never done before. We noticed a diff after the 1st eradication, Jonathan talked alot clearer. You will have to go on a probiotic though, because the eradication kills the good floura to. Plus, you might seem some acting up while the yeast is killed off. Oh, by the way Nizoral is not expensive, it costs us like $5 dollars for a 12 day supply and my son is 60lbs.

Kristen (ColeysMom)

10-01-2007, 01:18 PM

I'm going to talk to the GI about whether it's likely that Coley's FI is fungal realated. I suppose in the end there is no harm in doing an antifungal even if there isn't a problem right? Well except for the killing off of the good fungus right?

I remember a long time ago that there was a person on the FI board that had been treated by prescription...and everyone was like CHA OK! Because it doesn't make any sense when you are talking about a disorder that stems from inactive or deficient enzymes...but I think it may make sense from a yeast overgrowth scenario.

Mitsy, what sort of enzymes is Jonathan taking?

MitsyG

10-01-2007, 01:40 PM

The thing about the yeast, is that in our kids, when there is an over-growth it doesn't just stay in the GI tract, it actually travels to the brain and releases toxins into the body that effect behavior and thinking skills. Antibiotics will do this if they are used alot, they kill both good bacteria and the yeast, then the yeast will take over. No, it really would not hurt to get on it, because it is such a small dose anyway, just make sure that you have him on a good probiotic, while your doing the yeast erad, and after to. Jonathan takes 1/4 a Nizoral pill everyday for 12 days, of course the doc will give the correct dosage for weight. We have done 4 yeast erads. Are you talking about digestive enzymes?

Kristen (ColeysMom)

10-01-2007, 02:44 PM

Ya, did you say Jonathon is/was on digestive enzymes?

I'm kinda expecting this doc to prescribe them for Coley, as this is his usual M.O....

But since we keep ending up with negatives in the metabolic testing for the FIs, yet Coley is clinically showing, over & over & over that he in fact is FI...I'm wondering if it could be due to yeast overgrowth.

Coley had a staph infection in the NICU at about 3-4 days old. Then he had an ear effection and antibiotics at 15 months. His reaction to the antibiotics was HORRIBLE! So bad that just a couple weeks later he had a double ear infection and I refused the antibiotics. About a month later he had thrush that took us 3 months to get rid of.

Since then (and even before) we have off/on smelled that thrushy smell in his breath and sweat smelling urine. Since restricting fructose he still has a smell, but honestly I can't even come close to describing it. The best I've been able to do is describe the over all smell of my house...I swear it smells like a nursing home...

Acidocis?????

So I'm wondering if we should just go ahead with a specific carbohydrate diet/ fructose-free diet and probiotics. But before I do that I want to talk to the GI. Our appointment is 10/15. So I plan to ask him about the possibility of yeast effecting fructose tolerance...course we'd have to talk about what intoleracne means, which varies. For Coley his reaction is LARGELY neurological and behavioral. His ability to communicate goes down the tubes, he withdraws, becomes very rigid, loses his appetite and starts to get fixated, compulsive and and obsessive. Then his lack of appetite along with his behaviors start us down a path of low blood sugar and dehydration.

Which leads to acidocis...but I'm wondering if we are looking at this with maybe the wrong perspective...maybe what we are seeing is the effects of the neurotoxins, maybe the smell is yeast overgorwth...then it leads to ketoacidocis with the hunger strike, versus a direct link to the fructose...

So how do you find a good probiotic? And what's that s.bouladi stuff?

Mili...I have DH getting LOADS of cilantro and parsley today! I sent him to BJs for those jumbo containers! LOL!

RathyKay

10-01-2007, 05:29 PM

Mitsy, welcome. I never got around to posting on your intro thread. We started with a DAN! doc about a year ago. We've seen a lot of improvements, but I think our yeast problems have gotten worse? I haven't gotten everything figured out yet, but with the improvements we've seen, I know we're on the right track.

Kristen, to tie in with you... part of the reason I've been interested in Coley is that I'm starting to feel I can't feed Tom any fruit. I know fruit and fructose aren't the same, but... in general does fruit have more fructose than vegies? (It's a question... I'm asking you.) It just seems like with a little fruit, the giggles return and I'm back trying to beat down the yeast. We're still having constipation issues. It seems like fruit will soften the stool, but it makes it harder to push out. I have a realworld friend I bounce ideas of off. She's on an SCD email list (among other things). She told me some of those folks have reported similar findings and they were thinking it's the yeast digging into the intestine walls? Something along the lines of the yeast weakening the intestine (making it harder to push)... whether it's the yeast "roots" or if it's their by-products from the fruit? I'm not sure if this helps you either. And, I do notice Tom's breath being... different when the yeast is active. Sometimes I was wondering about ketosis? But I'm not exactly sure what that's "supposed" to smell like either.

On the probiotic, we're using Klaire products from our DAN! doc. He sells them to us at cost, and they are cheaper than what I've seen elsewhere. We're using Ther-biotic Complete (http://www.klaire.com/V775-06_proddetail.htm) which is more than just acidopholus. I know some of the GFAB folks are using a different brand... same kind of high-potency, more than one strain, hypo-allergenic as the stuff we're using. If I get a chance, I'll look it up later. We're also using Klaire's Saccharomyces Boulardii. Saccharomyces boulardii is a non-pathogenic, non-colonizing yeast that has been shown to have probiotic effectiveness in some clinical applications. It is a hardy microorganism that can survive gastric acidity and is not adversely affected or inhibited by antibiotics.My understanding is that S. boulardii helps crowd out the bad yeast (because, you're going to have yeast). Hopefully, in the midst of killing off bad yeast, bad bacteria won't be trying to takeover in the process.

Mitsy, I'm interested in your "yeast erads". Do you find that it's "birthday season" and you need to do an eradication? Do you feel like you have an ongoing battle? I'm just feeling like it doesn't take much to tip the scales on Tom to get the yeast going. Ugh! I hate it!

I need to go. Kids are getting out of school early this week.

milivica

10-01-2007, 05:33 PM

Hey! I just did the cilantro thing...got smarter this time and put the cilantro between a small slice of cheese focaccia with a dab of tomato sauce, made it a bit easier to eat. Once again, cut my time in half with less than half the usual amount of blood, and no clots. It is said also to chelate mercury through your urinary tract, that I can't prove or disprove (do a search on Dr. Omura and Mercury for the studies).

The parsley thing, oh man it's so darn good - I have a bag full I got the other day, just waiting for me to make it. Now I'm scared if I told you how to make them right or not....I tend to leave out details accidentally and I want you to love it...

4 nice big bunches of parsley
fresh cloves of garlic to taste (I use 4ish)
olive oil or oil of your choice or no oil if Coley cannot have
water
salt
2 cans boiled baby clams or better, one can boiled baby clams one tin smoked (or meat of your choice)

Remove as much stems from parsley (unless you like stems) as possible and chop or use food processor to mince

Put in pot, barely cover with 1/2 water 1/2 oil, or if you want all oil, or all water.

Simmer lightly till soft but not mushy,
add fresh garlic, minced
thicken as you would gravy using corn starch or flour - make very thick
add can of clams including juice
if it needs salt, add some
I sometimes add fresh parmesan or romano (grated) into the pot
I sometimes garnish with fresh parmesan or romano

Serve alone as a soup, over rice, over fettuccine noodles, in a bowl with croutons or crusty bread - depending on what Coley can eat.

It is so darn good, it seems all 'ethic' like you really know what you're doing like a chef or something, it's cheap, it's easy. And omg the next day, seriously, you'll have such a satisfying dump (they are so under rated aye)?

Kristen (ColeysMom)

10-01-2007, 06:44 PM

Kathy I just have a second, so I wanted to quickly answer your fructose questions...

- I've read that fructose is actually worse than other sugars for yeast to thrive because it's more difficult to digest giving more opportunity for it to be fed on...

- Fructose is in every single plant life with few exceptions (celery, mushrooms, avacado, olives, & cucumbers).

Funny, now that I type that, Coley isn't tolerating avacado or olives at all or mushrooms very well....I gotta go look up the starch content, mushrooms are bad cuz of the fungi right? hmmmmmmm

Ok, so in general veggies have less fructose than fruit, but there are exceptions, like avacado and rhubarb, and cranberry and tomato and carrot...

The best veggies, the lowest veggies are, I'm sure you can guess...the DARK green leafy sort. Cauliflower is an exception to that, but iceburg is not.

And then the sweeteners, sucrose (table sugar) is 50% fructose, honey i& maple syrup is 60%, and then there are some artificial sweeteners that actually breakdown to fructose in the gut...I'm assuming you avoid those so I won't go on about it, but if you need more info I can send you a list of all the sweet demons!

If you want to test the idea, I would suggest you simply avoid all of it for 3 days. You will surely know by then if fructose is contributing. At that point you can add back the lower fructose items until you hit a wall then you'll know where his 'tolerance' is.

Here's a shocker for you...whole grains have a lot of fructose also. And so do nuts...almonds are the lowest and Coley even tolerates a small amount of these every blue moon.

So, if I eliminate all the yeast feeders the yeast should die right? Can they go dormant or anything like that?

Based on what I've read I need to eliminate starch and I should be good....but that's a BIG one right?

I gotta get some of that ghee too! Although I have coconut oil...but haven't used it in a long time and just couldn't imagine what I could do with it without grains????

Ok, gotta fly...

RathyKay

10-02-2007, 02:01 AM

Kristen, let's see if I can hit all of your points.

I think mushrooms are bad because they're fungi. (I never liked them so I never serve them.:o) I was wondering on the avacado if Coley has problems with them because of the high fat content? Didn't you say he's having problems with fat? I'm not sure about olives. My realworld friend that I discuss a lot of this with has IgG allergies to olives. It could be "just because" for Coley... aka allergic reaction.

On the sugars, we've actually made the switch to honey... and now you're saying regular table sugar is better? I thought I heard honey was digested faster, so there was less problems for yeast? To be honest, though, we really don't have much sweeteners at all. I did make muffins last week for the first time in ages... with honey. (The girls had there first swimmeet and I wanted to have munchies for them during the meet.) Mr. Kay gets nauseous from NutraSweet, so we avoid all artificial sweeteners. No point in seeing Tom's bad reaction, since odds are pretty high he *would* have a bad reaction.

Ugh... I should probably test it. Do you homeschool? I feel like our diet is limited enough. It's such a pain trying to figure out what to send Tom to school with for snack and lunch. (Trying not to look like a bad parent.)

As far as your whole grain shocker goes... we're pretty close to Paleo and we're not really eating grains. I make cornbread once a month for communion. And I made those muffins with amaranth last week. Ummm.. that's about all I can think of. I am letting Tom have LaraBars, which are a lot of almonds ground up with dates ( and I don't think dried fruit is recommended for yeast *sigh*).

I think if you eliminate all the yeast feeders, the yeast will die. But, they don't want to and they will make Coley miserable in the process. I think it depends on the person, but in bad cases we're talking vomiting and diarrhea. Milder cases are flulike symptoms. You need to have your probiotics ready and maybe S. boulardii?

I can't help you with your ghee or coconut oil. We're avoiding both.

I tried to get the yeast books from the library but somebody beat me to them. I need to put them on hold and figure out what I'm doing next. Do you have a good website with low fructose foods and other info? Or do I have to go to that nutritiondata website and figure the foods out one at a time?

MitsyG

10-02-2007, 12:13 PM

KJ,

I just have Jonathan on Daily essential enzymes by Bio Align, from Vitamin Shoppe, no big deal, I put him on this myself, thought that it would be helpful.

Mitsy

Kristen (ColeysMom)

10-03-2007, 09:53 AM

There is a forum that I belong to...it's small and mostly a collection of information that me and a few others have stored up as we all struggle through the same thing:

Fructose makes our kids bonkers! And the doctors can't/won't figure out why.

Many of them also have other issues too: issues with wheat &/or dairy &/or chemicals &/or caorn...one even has trouble with rice.

Anyway, there's lots' of information about different FI types, and the diets and links that should help.

Plus everyone will help with any questions you have.

Here's the link: http://www.mfipb.com/?mforum=fructoseintoler

About the avacado's & the olives...he basically had the same reaction he has to fructose...it wasn't an allergy type thing. Behavioral & neurological. I was thinking it was the fat too. But now I'm wondering if it may have been the starch I gotta look!

Kristen (ColeysMom)

10-03-2007, 01:59 PM

I just double checked...there isn't much starch in either avacado or olives...it's got to be the oil.

Now that could be for one of two reasons (well I guess there could be others that we haven't looked at yet too)...

- Unsaturated fat is problematic in a yeasty environment...saturated is solid at room temp.

- High fat contents are problematic if one is deficient in Fructose, 1-6 bisphosphate enzyme. Which is being considered for Coley. It means that when he eats fats it's overal percentage needs to be no more than 15%. I don't calculate at every sitting, just mostly make sure that his fat intake is on the low side: non-fat milk, non-fat yogurt, low fat cheeses, lean meats, etc. And we go heavy on the allowable carbs. When he had the avacado it was mixed into a pasta salad that had a non-fat dressing. It should have been tolerated, at least better than it was.

Hmmmmmmm!

So far I've got the following list to discuss with the GI on 10/15:
-digestive enzymes
-yeast overgrowth and probiotics, and
-celiacs (Hal has convinced me to check into this)

Any other thoughts?

Let's talk about probiotics...

The word probiotics (to me) implies more than one...is it more than acidopholis?

Is there a way to get a 'complete' version of all the good bacterias and good yeasts?

Or atleast one that is a variety of good bacterias, and just add s.bouladi seperately?

Is there a natural way to get this into his system...I'm not sure I consider yogurt a 'natural' source, since it technically is an unnatural food for us...but other than that, is there a natural way to add good stuff in?

Where is Daedalus (Dave) this is right up his alley isn't it???? Did he ever come back after the crash? I'm going to try to find him!!!!!

RathyKay

10-03-2007, 02:25 PM

Real quick, because I'm helping out in Samantha's class in a few minutes... Thanks for the fructose forum link. I was doing some reading over there. I guess I'm thinking we don't have a malabsorption or intolerance, but a yeast-feeding problem. Still, I want to do some more reading.

On the corn (I saw a post about corn)... my realworld major corn allergy friend says there is some discussion on whether some people are reacting to the corn itself or the mold that grows on the corn. I guess all grains have molds growing on them. And, grains tend to be stored longterm, so the molds become an issue. My understanding is that they (the farmers? the corn-storers?) add aspergillus (sp? no time to look it up) to the corn as it is "supposed" to be benign. Anyway, some of the corn allergy sufferers are wondering if they have a corn allergy or an aspergillus (or whatever it's called) allergy. I don't know if that fits in your world... if there's less mold in degermed and hulled (and I don't know my terms very well) corn, and even less in cornstarch so that may factor into why some can tolerate varying amounts of corn?

On the probiotics, yes, my understanding is that acidopholus is just one strand of good bacteria found in many probiotics. The Klaire Ther-biotic Complete I linked to has several strains. I read of another brand one of the GF/CD folks was using that had a similar wide variety, high potency, hypoallergenic... but I don't have time to search for it right now. Anyway, I think if you found a good wide variety probiotic and then used S. Boulardii on top of that, it would be a good way to go.

The only other "natural" food product I know of besides yogurt is kefir. It's also milk-based, although I've read you can grow it in soy milk and coconut milk, but I don't think they do as well. Also, I think you need to watch it or it can get alcoholic, and obviously you're not trying to get Coley drunk. I'm kind of under the impression that kefir is much better than yogurt, but maybe it's because I think of yogurt as the ultra-pasteurized, highly processed food product, and kefir is still more homemade? And, if you buy the store-bought kefir, you're probably get a lower probiotic / yeast quality and/or quantity?

Hope this makes some sense. I need to go.
Oh, I don't know Daedalus. Guess I wasn't lurking over here as much then.

Kristen (ColeysMom)

10-03-2007, 03:26 PM

Thanks Kathy!

OMG! I just looked at the Klaire line...holy cow how the heck can you figure out which is the one you want???? or need????

I suppose the complete version will tackle everything...but cripe there's a lot there!

I was looking at the digestive enzymes too...my eyes are all glossed over now!

Hopefully the GI will have some input there!

Where do you get these? It says they are available only through a Dr. Are they expensive? Covered by an Rx?

Kristen (ColeysMom)

10-03-2007, 07:21 PM

Alrighty...I just saw some really disturbing stuff about grain molds...

I'm sure a certain percentage IS harmless...but, uh...YUK!

My particular favorite was that once it becomes unsuable for human consumption, that it be used as feed...excuse me, but doesn't it then become a contamined meat product?

Makes me wonder about mad cow desease!

And wahtever was on the wheat gluten that killed the pets!

I'm grossed out...Kathy, can you point me in the direction of the posts that you were talking about on this topic...

I'm dying to see how this is treated too...I wonder how that effects us...CRIKIE!

RathyKay

10-04-2007, 02:12 AM

Errrr... I don't think I wrote that very well. Reading one of the corn posts on *your* forum (http://www.mfipb.com/index.php?mforum=fructoseintoler&showtopic=313) I was thinking about her "I notice *some* can have it" and thinking along the lines of yeast and speculating from there. The bit about adding aspergillus to corn was from conversations with my friend. I'd have to email her for more info. I tried searching on one site but didn't get too far. And just to clarify... there is going to be mold on the corn. They're just trying to make sure it's a benign mold growing. Kind of like yeast and bacteria are growing in our intestinal tracts. We need to make sure they're good yeast and bacteria and minimize the bad.

I'm getting the Klaire Ther-biotic Complete through our DAN! doc. He offers it at cost. But, he doesn't offer their entire line; just the products he feels are the best for his kids. The S. Boulardii we have is Klaire also. This was the thread I was remembering (http://brain.hastypastry.net/forums/showthread.php?t=14406&page=2)... JudyLV post #13 uses http://www.customprobiotics.com/index.htm. In the same thread Cara post #4 lists some other probiotics that don't have as many varieties. She also has a kefir link.

We're using Houston Nutraceuticals enzymes http://houstonzymes.com/ - AFP Peptizyde, No Fenol, and Zyme Prime. To be honest, I'm not quite sure what we're supposed to be getting out of them. Part of it is to help in case of a glutening. JudyLV again (post #6) http://brain.hastypastry.net/forums/showthread.php?t=10228. I need to do more enzyme reading.

Kristen (ColeysMom)

10-04-2007, 08:41 AM

I NEED to go back through and reread ALL this and the casein stuff too!

My head is swirling!!!!

About the grains...I can't imagine that mold, any mold on the grains are good in the end. I read that penacillian spores (or something like that) grow on one variety...uhmmm....could that be what's wiping out all the other flora???? AND/OR could that be partially responsible for the super bugs? CRIKIE!

I just can't believe sometime what the gov't allows in our food supply!

YUK! like it's ok to have a certain ppm of mouse droppings &/or bugs...YUK!

I understand that it can't be perfect...but GROSS! And who the hell are they to determine how much mold and of which varieties anyone can handle...UGH!

Imagine if Autism turns out to be some reaction to a virus and a mold in the body or something...

MitsyG

10-04-2007, 08:58 PM

Kristen,

We have Jonathan on a probiotic from Kirkman, kirkmangroup.com. We get it from our DAN! doc. It actually has a huge amount of good floura, more than I have seen in any otc brand. It has 30 billion plus CFUs per capsule, a breakdown...L. rhamnosus 11.2 billion, L. acidophilus 8 billion, B. bifidum 8 billion, L. casei 1.5 billion, L. plantarum 3 billion CFUs, S. thermophilus 1.1 billion. It is alot floura stuff, I know, and I have no idea what they are for. We take 2 a night.

RathyKay

10-11-2007, 02:22 PM

My head is absolutely swimming with all that we discussed here lately pertaining to diet & yeast.

On one hand I'm interested in 'testing' some of the ideas and on the other I'm petrified.

In some ways I feel like I just keep taking more & more away from Coley...it's better for him or I'd give it back...but I have this fear that I'm going to learn that EVERYTHING bothers him and that I'm going to have to live with some of it or something...like trading mental health for fuel to grow or something. Of course that's a fear and has no basis so I'm trying to ignore it, but it is paralizing at the moment.

I am going to wait until we talk to the GI on Monday before altering his diet any further...perhaps some prescribed intervention (like enzymes or probiotics) will give me the courage.

Having said all that, one thing I'm interested in trying is the Paleo diet. Have any of you ever read up on or tried it? It's like a cross between Atkins and SCD. I actually learned about it way back...I think I saw it on Oprah or something years ago and tried it myself to drop those last stubborn 10 pounds that seem to appear out of no where somewhere around your 30th birthday...happy birthday your getting old & fat! LOL!

Anyhoo, it worked! And more than that it had amazing affects on my sleep and thought. Now, let me clarify first that I don't think, and didn't think I had any real issues, beyond stress related stuff in those areas. But was VERY surprised at how much more calm and rested and confident and strong I felt while on the diet. So I knew this guy, Ray Audette was onto something. It wasn't just a diet, as he described it, it's a way of life. That the human body was not designed to consume all sorts of chemicals (a no-brainer), but more than that even the array of grains, fruits & veggies that we do...never mind the overprocessed varieties. And mind you, before we (DH, my boyfriend at the time) tried it, we were already eating primarily from whole foods.

Ok, so with all this swimming around in my head, I decided to go get a 'refresher' on the diet (although somewhere in my unpacked boxes down the cellar I do have his book, Neaderthin)...I want to see specifically what items would be allowed that Coley now doesn't get due to the fructose restriction. I already know the grains need to be eliminated, but I'm curious to know which items I'd be adding back, wondering if my fears will allow it, if they are that scary or not...

So I'm looking on the net to avoid the cellar and come across this:
http://www.paleodiet.com/autism/

And I just can't believe it...the page itself doesn't say anything that we didn't already know, or hear about...but I was VERY surprised to see anything about Autism &/or behavior issues linked up with the diet itself.

Ok, so after refreshing my memory, a little: a few nuts (those lower in fructose) would be considered an 'add' for Coley. And also the fruits & berries. The interesting thing with that, is that as I got over my shock of the fruits on the list, as well as the root veggies (particularly carrots which are high in fructose) I recalled that these things are supposed to be eaten raw AND not inconjunction with other things.

It is REALLY interesting, because one thing that we consider for Coley was that d-glyceric aciduria....for which he had just been tested negetive for...well one of the 'quirks' with this enzyme is that it performs better in fructose breakdown when the body is in a 'fasted' state. Which means fructose is better tolerated on an empty stomach versus mixed with other things.

We tested this with Coley, only a couple times, but those couple times he did seem to tolerate stuff better...PLUS looking back at my volumes of notes on his behavior/intake shows a sharp decline in his consumption after fructose intake.

Ok...so I'm not real sure exactly why I'm rambling on here about all this...maybe I just have so many things swimming around in my head that I gotta put some of it into black & white to process it at this point.

Although I thought some of you might find the paleo diet interesting too...

KJ
Rather than derail the "Favorites for gfcf diet" thread, I decided to reply here, where we've already "taken over." I've actually been reading "The Paleo Diet: Lose Weight and Get Healthy by Eating the Food You Were Designed to Eat" by Loren Cordain. It's sitting on my couch. I think I've renewed it from the library too many times and it needs to go back.

I don't remember reading anything about eating raw carrots on an empty stomach in there. I have read various bits here and there about food combining, and I'm not arguing with you that it's a good or bad thing. I just don't remember "The Paleo Diet" talking about it.

We're pretty close to Paleo. We're avoiding starches for the most part (potatoes, yams, and sweet potatoes). We're avoiding legumes and beans. We're avoiding dairy and grains. We're trying to eat lots of leafy greens (I seem to eat more than my fair share of the leftovers:rolleyes:). But, our meats are not lean cuts. And we're not eating fish, because I'm more worried about mercury. We are taking cod liver oil. And, we're probably not on a good Omega oil ratio. (Oh, and I eat waaaaay too many chocolate chips.:p)

The other book you might want to look into... "Eat Right 4 Your Type: The Individualized Diet Solution to Staying Healthy, Living Longer & Achieving Your Ideal Weight" by D'Adamo. He's got a website, too. Anyway, this diet is based on your bloodtype. My family is all Type Os. They're the "original" bloodtype, who would have been the original paleo eaters. Anyway, here's most of my "review" from my book thread (http://brain.hastypastry.net/forums/showthread.php?t=11627 - yes, I need to add "The Paleo Diet.")
Actually, I’m only reading the O blood type and ignoring the rest, because that’s what my family is. The gist of it is, that certain foods cause clumping in your blood, kind of an allergic reaction, based on your blood type. He lists recommended foods, neutral foods, and foods to avoid based on blood type. You’re probably expecting this, but wheat (and gluten) and dairy are not recommended for type Os. And, a LOT of the foods that showed up on Tom’s IgG allergy testing are on the lists of foods to avoid for type Os. He also talks about the history of blood – type Os are the original (“old”) bloodtypes, the hunter-gatherer stage. We have higher stomach acid, better for digesting meat. We don’t do as well on vegetarian diets as some of the other bloodtypes. Our ideal diet puts us in mild ketosis! (Well, I thought it was interesting…) He also does some subdividing based on ancestry – African, Caucasian, or Asian. I got it from our library, but I plan on buying it.
For those that don't know, ketosis is the basis of the ketogenic diet, which is used for controlling seizures.

Another interesting thing... there's not much recommended fruit for type Os. It just seems more and more that fruit = yeast overgrowth for Tom. Anyway, I'm kind of looking at combining these two. Somewhere I read a quote (I think from McCandless, author of "Children With Starving Brains" that kind of sums up most of the current DAN! interventions.) Anyway, she was replying to someone who said the diet didn't work, and it was along the lines of "there are a lot of diets out there. Find one, or combine some until you find one that works."

I've lost my train of thought trying to find that interview. It might have been someone else...

Anyway, waiting until after your GI appointment sounds like an excellent idea... especially since it's so soon. Do you have your list of questions written down, ready to go?

So... where is your Daedalus yeast summary?

Kristen (ColeysMom)

10-11-2007, 04:07 PM

If you can, check out Ray Audette's Neaderthin book. It's not gonna say much more than the others I would guess, but he has lots of interesting ideas about how & why food combining is not such a good idea. I'm sure they all have their own twist on things too...

Anyhoo, I thought it was interesting then, and when reading about how to manage fructose 1 6-bisphosphatase (FDPase) deficiency it reminded me of some of things he wrote about. One thing was that certain veggies (particularly the fall/root types) trigger the body to begin fat storage. The reason this idea came back to me was that that particular enzyme is responsible for converting glycerol (the smallest particle of fat) to glucose for storage (and from storage) as well as partially breaking down fructose to glucose. So I imagined that FDPase must be the point in metablosm that 'decides' whether fructose goes to fat or immediate use.

Then again when looking at the d-glyceric aciduria (DGA) stuff too... Thing is that everyone has a 'tolerance' to fructose (hepatically speaking)... So it will hold true for anyone that hepatic performance in the presence of fructose will be 'more' efficient when it is not combined with other things. This is a metabolic process not a digestive one. I believe the food combining ideas are based more on GI type issues...but I haven't read too much into them so I may be wrong on that. I guess you could equate the 2 ideas...as the result is basically the same...but Ray Audette was discussing the role of fruits & veggies in terms of the way they are used in the body (metabolics) versus GI comfort/discomfort.

I'm still a bit fuzzy on how (or if) a yeast overgrowth could effect liver performance...but at this moment I'm going to trust Hal's word that it can...I just haven't been able to process it yet. I really need to 'get it' to get it...ya know.

Ok, so beyond that...Ray Audette encourages you to eat everything seperately, as would have been done in paleo days. And to eat small meals frequently...grazing...in doing this don't mix. But he doesn't forget that we do live in a civilized world. He just suggests that our bodies haven't adapted to this fact and to respect that. So when sitting down for dinner, have a salad to start. Then have your meat along with your root veggie...

As for the veggies though: the ones that trigger weight gain (storage for the winter) are those that come up in the fall...mostly squash types. And those that come up in the spring are the ones that trigger weight loss. I looked at these once from the fructose perspective...I was only able to conclude that those that come up in the fall have a higher starch and lower water content than those that come up in the spring. Starch gets converted directly to glucose in the gut, fructose in the liver...so perhaps the high BS (from the conversion of starch to glucose) level in the presence of fructose will trigger the fructose to go to storage immediately...????? Versus the more watery less starchy veggies that will not increase BS, thereby demanding the fructose to go to glucose for immediate use...??????

If you throw a steak in the middle of that...what's gonna happen????

And then there's green leafy veggies...and really don't fall into either category...so these are pushed big time in his book and allowed on the same plate with meat. And funny how these are the most tolerated in the FI world too. The basically provide nutrients, and not much nutrition. AND equally ironic, also ok on the yeast erad diets, and the keto diet...

As for blood...I don't know what type I am...I think I'm O- ...I think Coley & Audrey are A+... Here maybe you guys can help... My dad is the best blood type for donating (that's O+ right?), I'm the second (Is that O- or A+?)... Coley & Audrey are the same... I forget whose O+, A+ and whose O-.... My dad used to drill into me to give blood, he'd get calls the moment his body was able to donate again...and he used to tell me I needed to go with him. I used to fall under the guidelines for weight all the time (I'm short, not a size 0) then they changed it and I was ok to give and did...once...it wasn't pretty...I've never given again...but they STILL call looking for my blood.

Anyhoo...that's all pretty interesting too!!! Can you talk about the other types at all, or did you skip over those???

Ok, onto Dave...I was planning to post our conversation...I've decided not too. Without getting into it very much, he is not convinced that diet will effect NO levels. Or that inappropriate NO levels would have an affect on diet sensativities.

His theory and research is that inappropriate NO levels are behind many issues including autism. And that inappropriate NO (nitric oxide) is generated by an inappropriate 'friendly' external bacteria count...

What confused me a LOT in our conversation was that he couldn't wrap his head around the idea that an inappropriate internal bacterial 'balance' could also be responsible for causing issues...or that could even be contributing to NO levels (not that I know) but we kinda got hung up on that...whether or not internal bacteria or yeast could have any effects good or bad... But did suggest that adding in probiotics couldn't hurt.

He has no respect for diet modifications or yeast erad concepts as a autism treatment or mediation. No matter what I said to convince him that diet CAN and DOES play a big role, he dismissed it as placebo. And even explained to me how placebo is controlled by NO levels.

BUT, he did suggest that we eat lots of iceburg lettuce to increase our NO, which should inturn improve our mental & physical health...ok. So I was left sorta confused...I guess iceburg lettuce is an exception to the rule.

KJ

RathyKay

10-11-2007, 05:21 PM

If you can, check out Ray Audette's Neaderthin book.
I'll check later to see if our library has it.
I think Coley & Audrey are A+... Here maybe you guys can help... My dad is the best blood type for donating (that's O+ right?), I'm the second (Is that O- or A+?)...
I think O- is the best for donating. + and - refer to the Rh factor; + means you have the factor, - means you don't. My Dad is O+ and his mom was O- so she only had one kid, as the negatives can't handle positive blood. I'm guessing you are O+ as type Os can donate to type As and Bs and ABs.

Anyway, I did buy that book awhile ago, so I looked up the type A diet. Some random bits of interest for you. Type As flourish on vegetarian diets. Animal foods speed up Type O metabolic rate and make it more efficient. Type As tend to feel sluggish and less energized after eating red meat. Type Os have a higher stomach acid and burn meat as fuel. Type As have low stomach-acid and ultimately store meat as fat.

Dairy foods are poorly digested in Type As and they provoke insulin reactions. Didn't (doesn't?) Coley have blood sugar problems?
Wheat is a mixed factor in the Type A Diet. While Type As may eat wheat, they have to be careful not to eat too much of it or their muscle tissue will become overly acidic. Unlike Type Os, who thrive on slightly acidic tissue, Type As can't utilize the energy as quickly, and calorie metabolism is inhibited.
Then he goes through the various food groups and lists what is highly beneficial, neutral or to be avoided. He also says, if you have a known allergy, you do not eat that food, even if it's highly beneficial to your bloodtype. (I know, you already knew that but just in case there are any idiots lurking, as opposed to highly intelligent, desperate types.)

So... going along with your avoiding "mammalian meat" (or however you termed it), beef and pork are on the avoid list. There are no highly beneficial meats. The neutral list is chicken, cornish hen, grouse, guinea hen, ostrich squab, and turkey. There are some highly beneficial fish, some neutral, and some avoid. There are no highly beneficial dairy and eggs. But, eggs are listed as neutral, along with ghee, kefir, yogurt, and a very few cheeses. Most cheeses are on the avoid list, along with milk, casein, and whey. Type As should eat the more alkaline fruits. He talks about the high mold counts for melons, cantaloupe, and honeydew that make it difficult for Type As to digest, and so should be avoided.

Anyway, I find it kind of fascinating. I'd recommend seeing if your library has it. Also, if you go to his website, I think you can look up individual foods to see if they're recommended or not for your type. http://www.dadamo.com/

Anyway, I have to finish a project I'm avoiding before the kids get home.:o

Kristen (ColeysMom)

10-15-2007, 03:06 PM

Hi Guys,

I don't have much time, but wanted to update you on our GI appointment today. We really liked the doctor! He took notes then gave us the paper when we left...that was pretty cool!

We talked about a lot of Coley's history and he came to many of the same thoughts that we did.

He wants to mostly monitor Coley for a while to get to know him a bit before doing anything invasive, particularly with his bad reactions to chemicals and medications.

To start off he recommended that we give him probiotics. He didn't want to do any sort of yeast erradication type treatments though. He said there just isn't enough knowns around want the right combo or levels are, but that he has had VERY good results from adding some of the (known) good types in.

He ok'd us adding in some green leafy type veggies, but has asked that we do it slowly and 1 at a time to monitor his reactions.

He also took a boat load of blood to test, some general type stuff, but also he is testing for IgE's, a bunch of common stuff but also some not so common like wheat, citris and berries.

At this point he is thinking that Coley could have celiacs or an infection.

He will also be discussing Coley's case (and reviewing his entire record) with Dr. Buie and the metabolic Dr for next steps. He'll send us a summary and report once the labs come back. We are to come back in after T-day.

We are still trying to get a ton of stuff done here, but have been slowed down by a stupid head cold...we've all got it! So I gotta get back to work, we are WAY behind! We need to get this stuff done for a big family get together on the 28th.

So there's the quick update. I'll back soon.

KJ

Kristen (ColeysMom)

10-15-2007, 08:06 PM

Ooops, forgot to mention something...

The Dr is also going to check Coley's MMR & chicken pox titers. Hopefully we can eliminate his 4yo booster!!!! I couldn't believe he offered to do that!!! This guy REALLY is open minded AND eager to get to the root of things....

KJ

RathyKay

10-16-2007, 01:21 AM

Sounds like a positive appointment! My only complaint is the follow-up after Thanksgiving. Can you wait that long?:p Anyway, I hope he's able to find some answers for you.

Kristen (ColeysMom)

10-16-2007, 09:31 AM

Kathy, it's only 6 weeks away, I thought that was pretty good...I think he needs some time to review Coley's ginormous record and to get the other two EXTREMELY busy docs together...do you really think that's a long wait???

I forgot something else too...he is also checking Coley's vitamin levels for a deficiency. He's particularly interested in vitamin D, B and folate.

We should have his summary report & lab results before T-day.

I checked and the Florastor Kids (s. bouldarii) that he recommended...I was pleasantly surprised to see what it was when I checked...contains loads of fructose, so I need to page him back for a different brand.

I need to double check Klaire, but I'm going to see if Kirkman's has one too...does anyone know of any other brands. Just want to make sure I have some options that will still meet Coley's restrictions before I page him.

peglem

10-16-2007, 10:07 AM

I get my boulardii from kirkmans. Only other ingredient is plant cellulose.(capsule material) Does Coley swallow pills, or do you have to open capsules and mix it with something?

Kristen (ColeysMom)

10-16-2007, 10:43 AM

Oh awesome, thanks Pegs...saved me the work! Coley chews his capsules (vitamins and tylenol)...EEEWWWWW YUK! :eek:

Are these powdered filled? I wouldn't imagine him chewing those up. If so I would put them into something.

peglem

10-16-2007, 11:10 AM

Yes, powder filled. Allie never used to be able to swallow pills. But, what works for us now is to place the pill on her tongue and follow immediately with a syringe full of water-it moves the pill back and it goes down when the water gets swallowed.

mrsjerome

10-16-2007, 11:52 AM

Could I ask if these diets are for a lifetime or is there ever come a time when other food may be added to it. Or is this just too new of a treatment to have the answers for it yet. This topic has really got my attention I wonder if it somewhat similar to the ketogenic diet for seizures that some are on because they can't tolerate the anti-seizure meds. Or is that just something completely different?

Kristen (ColeysMom)

10-16-2007, 12:05 PM

Actually I find it intreging that the SCD, the GF/CF, the yeast erad type diets AND the keto diet are all VERY similar!!!!!

Particularly since when Coley went on the anticonvulsants some of his ASD behaviors went away.

A metabolic Dr prescribed the fructose free diet for Coley, then suggested the low fat, and then the low dairy...as we sifted through his specif metabolic disorder. So we've sorta backed into the 'same type' diets here...makes you think, because as we moved through his ASD behaviors have dwindled more & more.

There also appears to be some sort of relationship with gluten intolerance and ASDs, similar to the fructose intolerance.

From what I understand about intolerances, particularly metabolic ones...it has more to do with a genetic defect so technically it would be a life long thing.

And that's sorta where we are at this point...but the doctors aren't sure exactly why Coley is intolerant to fructose without doing a liver biopsy...which is VERY dangerous for anyone...never mind a child...and without considering Coley's horendous track record with meds. So right now they are looking at other things that may be causing his intolerance. And funny, one is celiacs and another is a yeast infection. So once again we've backed into this...and through maintream medicine I might add!

This is incouraging to us though, because if it does turn out to be an infection or a digestive intolerance, both of those give hope that once the body is healed a normal diet can be achieved!!!! And Coley sure does want his veggies back! He even asked the Dr yesterday, several hundred times!

Here's a pretty interesting report I stumbled onto this morning: http://www.autism.com/treatable/adams_biomed_summary.pdf

I was trying to look into Buie's relatiosip with Kirkmans...I had been told that he consulted on their formula's...but we were recommended a different probiotic brand????? Makes ya wonder huh!

RathyKay

10-16-2007, 02:28 PM

Kathy, it's only 6 weeks away, I thought that was pretty good...I think he needs some time to review Coley's ginormous record and to get the other two EXTREMELY busy docs together...do you really think that's a long wait???
Some of us are impatient.:o Actually, we were told the IgG tests would take six weeks to get results back, so it's probably not bad. I just want to know now!
Coley chews his capsules (vitamins and tylenol)...EEEWWWWW YUK! :eek:
Any idea how his zinc is? Zinc affects your senses of taste and smell - not enough zinc, not much taste or smell. (Although, Tom was *still* a picky eater for not having much sense of taste or smell.) And, too much zinc is bad for you, so don't overdo it.

A couple of people on another forum mentioned the pill swallowing cup (http://www.oralflo.com/) if you're interested. We never tried it, but the theory sounds pretty good. Tom has only recently begun swallowing pills - sometime this year. It is soooo nice. I think the "kicker" came when I gave him a pill in the bathtub, and he had his elbows up in the air (to be above the sides of the bathtub). That got him leaning back enough so that when he drank some water, the pill floated (sunk?) to the back of his mouth and he swallowed it. Tom is now a champion pill swallower. He can handle the biggest pills with the tiniest bit of water.
Could I ask if these diets are for a lifetime or is there ever come a time when other food may be added to it. Or is this just too new of a treatment to have the answers for it yet. This topic has really got my attention I wonder if it somewhat similar to the ketogenic diet for seizures that some are on because they can't tolerate the anti-seizure meds. Or is that just something completely different?
I lurk over on the Gluten Sensitivity / Celiac Disease forum a lot. (Actually, most of the folks have moved here (http://www.glutenfreeandbeyond.org/forum/) and only post occassionally on GS/CD.) From what I've read, after removing these offending foods from the diet, the body has a chance to heal. Sometimes, after removing those foods, the body will overreact to other foods that never seemed to be a problem before, so you feel like you have a limited choice of "safe" foods. Once the body has healed, some of those foods can be added back in. It does seem like gluten and dairy should be removed permanently. Some people have *silent* reactions to gluten (and probably dairy, but the research seems to be more on gluten and I am reading a anti-gluten forum), with damage occurring but not being noticed until it's really bad. I did read of one person on a Celiac forum who quit the gluten-free diet because they didn't notice any problems once they had initially healed. Many years later, it caught up with them and going back to a GF diet was not working. It helped, but it wasn't enough. I don't frequent that forum enough, so I don't know how that person is doing. They were just trying to warn everyone to stick to the diet, even if they felt fine.

In our case, dairy was the first food I removed. That got Tom off his seizure meds. I have no intention of ever giving him dairy again. Once off drugs, we figured out that rice and coconut trigger seizures for him. As long as he's in my care, he'll never have them again. With gluten, the improvement was more subtle... better fine motor control (he started writing!), better balance, improved vision, and he seems more "with it." The GS/CD folks are very research oriented and have many threads on the latest studies related to gluten. I no longer believe it is good for us. It is associated with too many auto-immune diseases. Check out Cara's The Gluten File, if you haven't already (http://jccglutenfree.googlepages.com/).

Anyway, I'm looking at gluten-free, dairy-free, rice-free, coconut-free as lifelong for Tom. The other foods he tested positive for, I hope to one day rotate back in his diet and see what happens. I guess I'm waiting for the day when he can give me a more accurate description of how he feels... instead of me relying on my observations of him after eating an offending food. Plus, you have to wait 4 days before adding in something else.

One other thing... they talk about "outgrowing" allergies. I've read in a couple of different places that you don't really outgrow allergies, your body just changes it's reaction to it. Anyway, there is a lot of unknown about the immune system and its reactions. The experts are still learning and I'm guessing the best I can.

Kristen (ColeysMom)

10-16-2007, 08:13 PM

I just heard back from the GI...he suggested we go with Kirkmans since there is less hassle obtaining it. He just wants to see how Coley does on it until we see him again on the 26th...at that point he'll decide whether we need to continue or not & for how long...but he sees this as a very temporary investigative type thing.

I'm thinking I'll just sprinkle it on something, if that does work I'll try that pill swallowing thing....thanks for the tip!

rhyanen

10-17-2007, 04:56 PM

Congrats on the successes you are having with your son! :)

I have been waiting 4 years since my son's diagnosis, to finally live near a DAN doctor, and on Monday, I finally got in to see one. He gave me a ton of info on the different biomed treatments, and my dh and I are in the process of narrowing down which ones are a definite.

He is already on the GF diet because he was diagnosed with Celiac disease when he was 2 (one year before his autism diagnosis.) We immediately began to see improvement both physically and behaviorally. After time, his stimming lessened, he developed functional speech, mutism gone, tantrums decreased a ton, etc. He is now mainstreamed in second grade and has a few friends, though it seems like they would rather play with him because he has an Xbox 360 than because they really like him. :(

He has also been struggling this year with his new teacher and the classmates. I think he is getting to an age where other kids are noticing his differences more and he is starting to be manipulated and ostracized. It's heartbreaking!

So even though he has improved about 80% with just the GF diet, I am still hoping to offer him more biomed treatments to help him with socialization. Any suggestions?

I am also going to look into RDI for him. It seems everyone on this board is raving about RDI. How does one pay for RDI anyway? I'll have to do some digging.

Anyway, I am really looking forward to this biomed stuff. I have been reading about it for years, but never had access to a DAN doctor until now. Wish us luck, and wishing you continued progress!

Amy

RathyKay

10-18-2007, 01:45 PM

Amy, keep us posted on your DAN! progress. I know we did a ton of bloodwork after the first appointment and then came back for the results for the second appointment. We definitely don't have everything figured out yet, but the progress is noticeable, so we keep trying.

Have you tried going dairy-free? Dairy gives Tom a "milk buzz." Too much dairy leads to daily seizures for him. Are you running the IgG food allergy tests to see if there are more foods that bother your son?

We have not looked into RDI. I have been greatly intrigued by Mili's posts. I just wish it were a little more accessible. I am more motivated when I can do it myself. Plus, it's easier to convince Mr. Kay to give it a try.

Kristen (ColeysMom)

10-18-2007, 02:02 PM

Kathy, order the book and try. I really don't think you can cause harm by doing it 'wrong.' And honestly I really don't think you can do it wrong.

When I take a big fat step back and look at it, to me it looks like exactly how you teach an infant. They don't understand direction or too much language...mostly they rely on facial expressions and tone. I am only at the beginning, and it could change as I move forward...but with the right perspective, and a few examples I think you can get the hang of it.

It's not demeaning though...it doesn't talk down, just sets up situations where facial expressions are the point of information versus language.

And one other thing I'd recommend...find a baby to spend some time with...;)

What has worked SO well for Coley is having him look at Audrey for information on how she feels or what she may be thinking. In turn he has been doing so much more natural referencing with us.

He's so stubborn that playing these games and getting him to get into them has been hard...it's so easy for me to tell him, check Audrey's eyes...what are they saying...this makes sense to him, because he KNOWS she can't say...Coley you are yelling to loud and it's scaring me, or that's funny I like when you do that, etc. So now we talk about it all the time, and it's advancing past, 'she's happy' 'she's laughing' 'she's scared' etc. He's now saying stuff like, "she likes that mommy, I think she wants to learn how to do that too." Then he'll say right to her, "don't worry Audrey, when you're bigger enough I will show you"... It's incredible how just a little nudge, or filling in a little 'hole' connects SOOOOO many dots.

So everyone run out and get yourself an infant today! LOL! Call now, and you can get a years supply of crappy diapers for absolutely no charge*! :D

*customers are responsible for purchasing their own diapers and food.

RathyKay

10-18-2007, 02:31 PM

Hah! We got rid of our crib two years ago. Tom convinced us he was last. The roller coaster ride that is Tom has too many steep dips. So... which book? Relationship Development Intervention with Children, Adolescents and Adults: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD or Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD/ NLD or something else entirely? On the downside, our library does not carry either one, and the LINK+ books are all out. I can't put a hold on a LINK+ book.

Kristen (ColeysMom)

10-18-2007, 02:41 PM

Where are you looking that they are sold out, Amazon?

If so, try here: http://www.rdiconnect.com/resources/default.asp?cat1=1

As far as which one, let Mili weigh in on that, she may not be able to tell you exactly, but should be able to help you figure it out.

It all depends, I guess, on where you are and what your biggest hurdles are...what you want to accomplish first (based on what makes the most sense), etc.

You can read the preface and introduction online to get an idea, but also the comments from people who've bought them help too.

As for the crib, I'd be happy to lend you ours when Audrey's done...;)

milivica

10-18-2007, 03:04 PM

RDI is a miracle for every child on the spectrum, I know I'm not 'supposed to' say that, cause asd's are supposed to be all so 'different', but not in the core deficits that make us autistic we're not, and that is what RDI works on.

Go to www.rdiconnect.com

Go to the Family link, and find a consultant in your area.

Call them to see what it will cost per year (I will guestimate $6,000/year) and see what insurance the consultant takes.

Our consultant takes insurance, but, also medicaide so our RDI is 'free' to us.

Here is a copy of a letter, I posted to people that wrote me from Oprah when I posted on her site:

Personally, your first interventions I feel should be biomedical. That can be extremely hard, because pediatricians act like "well, your child has autism, so that's the problem" and blow mothers off like we're idiots. True enough, removing casein and gluten are often helpful, sometimes miraculous - you can get him allergy tested for starters, BUT, if he has an 'intolerance' to dairy, gluten, artificial dyes, fructose, that will not show up in allergy tests. So first thing, make sure he is medically well - usually there are GI issues, I rarely meet an autistic without them, including myself and my son.

Diets and all other interventions aside, I want to encourage you and everyone, to do the one thing it seems no one is doing with autistics - helping them gain function. Not memorized skills.

Let me explain.

There were two doctors, a husband and wife. They read through gobs of books on typical (normal) child development, to try and figure out what 'milestones' do not develop or develop poorly for our children on the spectrum...as well as what develops, then is lost. It's so intangible it's hard to describe, but, they isolated several aspects of development (milestones) that ALL people on the spectrum somehow skip, or develop very poorly. By developing these milestones your child can live and be in this world, just like everyone else, instead of creating a world your child can tolerate (picture schedules, driving the same way everywhere every time, manually explaining rules of politeness to no avail, never ever ever moving the toaster to avoid the inevitable meltdown, etc...). Who would be happy, only tolerating the world? Yet every 'expert' seems to have this low expectation for autistics.

What this intervention does, is build the neurological deficits your child has. For instance, if there are 100 milestones typical children develop, well, your asd child has developed 95 - and those 5 - effect everything in his life. Sort of like 5 weak links in a much larger (neurological) chain.

I swear to you, this works for every child, because it's not for 'autistic' development, it is typical development children without autism gain automatically, packaged in a way children with autism can gain from manually - with you as their guide. Look on google or ask jeeves for negative feedback, you won't find it, not by anyone that did the program (all the way, not half hearted).

The program is called RDI, it stands for Relationship Development Intervention. It's the first thing in my life, that was not bull. The site is www.rdiconnect.com . I thought the site looked like flowery promises from yet another doc that would profit off my kid's autism - it is not. No need to mention my name, cause I'm just another parent in the program, that has worked miracles for my child, and to my surprise - worked miracles for me, in my 40's. RDI has opened a new world for me, for my son....for the first time in 11 years I feel like his MOM, not his teacher - scientist - researcher - dietician - therapist, but his MOM. And a competent mom at that. I call that a miracle. You know how the Crocodile Hunter was about crocs? That's about how enthusiastic I am, about RDI. Which, anyone would be after searching a life time, and finding answers and direction at last.

milivica

10-18-2007, 03:04 PM

I know how crazy it was, to put my email on Oprah, but finding 'sanity' for the first time, with RDI, well I can't forget where I came from, those dark desperate crazy days of not only being a parent of a child with autism, but having survived autism myself. I don't want my kid to survive autism, I want him to be a kid, have a childhood, have friends, a productive job and loving wife - and have lots of grandkids. NOT to much to ask, anymore.

I hope all of this will make sense, I totally stink at summarizing. As I said, giving out my email on Oprah might be crazy, but as person on the spectrum, doing what is 'right' means everything to me. I speak to you, as a mother with a child on the spectrum, who now sees a real 'life' for my child. One in which HE gets to make the choices about his present and future. I no longer envision him someday in an asylum, with some overworked frustrated low paid worker where fear and pain are the only constant in his life, someday when he is grown and I am gone.

Give the concept of your child gaining FUNCTION, instead of skills, a chance to sink in...it is a very difficult concept, all therapies focus on skill, not function - why didn't I ever wonder, why my kid was sitting at a table 35 hours a week, being 'taught' to stack blocks without a meltdown - heck he could stack blocks, why teach him that, why teach him blind compliance? I don't want him to be all other and no self, that's all blind compliance will lead to, that and frustration, depression and likely self abusive behaviors for an outlet. When you are typical, and have had 'function' since birth that has developed automatically.

I would HIGHLY recommend, going to that site, and getting a better sense of what RDI is, and find a RDI consultant in your state. When I got a consultant, there was no waiting list, dunno if it will be the same for you. At our first meeting, it was like for the first time ever ever EVER, I was taken by the hand and told, "your son has autism, ok, here's what you do...." and week by week, have received guidance. RDI is paid for by many insurances, as for us our son is on disability so the state pays for his RDI because it is proven, and progress is documented. You send 30 minute tapes to your consultant every other week, to make sure you are helping your child gain function, not 'skills'.

Back to 'function', the crux of RDI...it’s important to know the difference between functions and skills. You might think you are “doing RDI” if a child is participating in an activity, but if the child is just “doing the activity” and not developing positive episodic(emotional) memories, then it’s likely they are just practicing skills or going through the motions, as I suspect Jenny's son might have done with her example about throwing the ball...that is not developing functions. See? My son never looked at my face much, not because he was 'avoiding' eye contact like so many books written by nonautistic people claim, he avoided eye contact for the same reason as I did, we didn't read body language, facial expression, all those subtleties. RDI doesn't teach your child to look at your face, it teaches your child function (body language) so he has a reason to look at your face, and will. See how function works? When you gain function, the skills (eye to eye contact) will be there. That's why no one has to 'teach' a baby to look at your eyes or face, they already have the function. You can be in your 40's like me, and never have that milestone, once you do, you can't stop looking at eyes and faces because they give you information, they are a part of communication - not just words, words are only a part of communication, and not even a big part!

Is Jenny's son referencing her face? Is he noticing weather she is interested in the game or not, or is she merely a 'receiver' and 'thrower'. A child on the spectrum can mirror typical behavior, they cannot share themselves by imitation though.

Also, do not worry if your child is so called 'low functioning'. In RDI, there is no such thing, you work on the function deficient in ALL persons on the spectrum. And relax, guess what, there is no 'window of opportunity'. Holly should not have said that, she is wrong. If there were, I'd not have made the progress I have, starting at almost 42 years old. I am not the oldest doing RDI either! (Both my son and I are doing RDI). I have no idea where this 'window of opportunity' stuff started, the brain is not solid, neurology is not concrete....when an older person has a stroke, they can relearn things, develop new neurology to speak, move limbs, they're not 'too old'. Well, autism is neurological, create better neurological 'function' and you automatically gain the skills....like a stroke patient learns to talk, move their arms, your child learns to enjoy a game with you because you're having fun both contributing to the activity, or enjoy a conversation because you're both sharing feelings and thoughts and ideas, not cause a conversation is an opportunity for your kid to unload every fact he knows about dinosaurs, the epidermis, or cheese - completely unaware of weather you are interested or not.

Here is an example from the RDI site:

For example, a compliant child might “go through the motions” without any real sense of joy, competence, or meaning. They might be able to toss a ball back and forth, without sensing any enjoyment or competence in doing so. In other words, they may be emotionally flat, just going through the motions, rather than actively engaging with a reciprocal social partner. To use another term, skills without functions tend to be “instrumental” – that is, practiced without an “experience sharing” focus. Some examples of skills without functions:

* A child playing “patty-cake,” going through the routine and getting the actions and words right, with no sense of fun or dynamic interaction.

* Being able to read but not understanding the meaning of what is being read (this is seen in hyperlexia, for example).

* Talking in sentences but not understanding that one of the purposes of conversation is to share experiences.

* Going to a party and making sure to greet all the other guests and say the “right thing” but not enjoying oneself or relaxing.

* Having instrumental social skills such as greeting guests, but not being able to participate in relationships that involve co-regulation.

* Knowing the words to a song but not being able to enjoy singing it with another person.

* One that Dr. Gutstein has used in workshops: Being able to tell a joke but not realizing that the purpose of a joke is to share laughter.

In general, people who have developed skills without functions can be:
Compliant but not interactive
Capable but not purposeful
Knowledgeable without applying their knowledge to practical situations (especially social situations)
Knows the “rules” but not the point of an activity

Two other sites...one I post on constantly, for 7 years here http://brain.hastypastry.net/forums/index.php you'll have to register, it's all free. We're totally broke, so if I recommend it it's either free or paid for by the state or insurance.

Another person I completely admire, had done several videos on YouTube, to to www.youtube.com and look up silentmiaow and be sure to see at least her interview on CNN as well as her video about being an UNperson. She's wonderful.

Finding RDI, was like finding a lake of cool clear water after dying of thirst (for answers for my son, and myself) all these years. It is my moral obligation to share what I have found. I cannot force you to understand it, to do it. If you are in Illinois, my consultant is the BEST, I cannot vouch for every consultant obviously. She is so excellent, we drive a state away rather than use the consultants in our state, to her. Having autism myself, I can smell bullshit from 1,000 miles away, this woman (Amy Lukos) is for real. The program, the RDI itself, is the first sound real thing I've ever found that works. I would absolutely pursue biomedical interventions, RDI will not cure epilepsy, food allergies, etc... But there is NOTHING out there, what so ever, that help children on the spectrum gain function. If you are doing RDI, and an aspect of it is not working, the consultant will even be able to determine there must be a biomedical issue going on, and send you in the right medical direction.

I have no idea why the whole world, isn't talking about RDI. I can only guess it's cause Dr. Gutstein and his wife Dr. Sheely who created the program have a patten on it, other doctors can't make the almighty buck from talking about it, so don't talk about it. Because of RDI, now I'm a mom with a son. Not a mom on the spectrum with a kid on the spectrum. Not a mom worrying 24/7 about what he'll do when I'm dead someday, where he'll wind up, how he'll be treated, how he'll be mistreated. And that is what I want for you, your child, and every other mother and child out there. It is not too much to ask or expect, that your child have a shot, a real shot at everything you ever dreamed for him. For my son, it's like at 11, someone has handed my baby back to me, and I get to raise him finally, as a my son with nothing but hope in his future.

Just that you would sort through all those posts on Oprah, and email me, tells me you are committed to helping your child, and you will succeed. Etiology of autism is still a mystery, but what to do about it is not, it is a crime and a sin, that doctors do not help - the average doctor does not know what to do, and does not bother to learn...they are into 'sick' care, not 'well' care. You know? I hope to see you on the forum of mom's I am on, it's very supportive and informative there.

My very best to you,
From the bottom of my heart,
Milivica

peglem

10-18-2007, 04:04 PM

Kristen (ColeysMom)

10-18-2007, 04:35 PM

I got

Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD/ NOS

I haven't gotten too far into it. It goes through the first 3 stages. It's mostly exercises, but does give a good explanation of what you are trying to accomplish first. So I've been able to come up with some Coley-tailored type stuff easy enough.

I also got http://www.rdiconnect.com/resources/viewResource.asp?pid=148

I haven't read too much of this one yet though, but at the moment I see Coley's frustration & inflexibility as being his biggest issues..but helping him to resolve that really requires him to be more developed in some other areas first.

It was funny, I don't know if you can get a good look at the picture of that book, but Coley asked me why the little boy was so sad on the cover. I told him I didn't know, and he told me he thinks it is because he didn't listen to his Mommy. I found THAT pretty ironic! And pretty good since we have just been working with the whole facial expression and refferencing thing.

milivica

10-18-2007, 07:40 PM

Ok, if someone was looking for help finding books, sorry I missed that! :o

I haven't read any of the books, personally I would NOT go with My Baby Can Dance though, I gave my copy away, was disappointed cause it doesn't tell you what to do. I didn't want to read cheery stories about OTHER PEOPLE with consultants and the progress happening. I wanted the PROGRESS, not stories about it.

Peg or others reading books might know good reading recommendations.

A NOTE ABOUT REFERENCING:
Referencing, is not the act of your child looking at your face or the face of another person. In RDI, referencing happens when a person receives guidance by looking at someone's face in a moment of uncertainty. So remember, uncertainty/guidance....both of those happen in order for looking at a face to be referencing. Noticing a dirty 'sanchez' on JW's upper lip is not referencing because there was no guidance received, by looking at the face. I finally got the definition of what referencing is, a couple of weeks ago. So, again, referencing is when your child looks at your face (or your husband's or teachers or siblings) in a moment of UNCERTAINTY, then receives GUIDANCE. If there is a bug, and the child is uncertain about it, they may look at you and by your expression know 'it's ok' and not to be scared of the bug. A child that is not good at referencing, will need you to SAY "It's ok", will need to hear the words. NT babies not yet walking reference, may crawl up to an object, and woosh their head will whip around to look at the parent's face cause they are 'uncertain'. By the parent's expression, they'll know if the object is ok or not, that is the 'guidance'. See?

Kristen (ColeysMom)

10-18-2007, 07:57 PM

Yes..I get it. Mili am I giving a bad impression????

If so I just want to make sure, I'm just first trying to get Coley to understand that there is information to be obtained by investigating a face. And he's getting that well. As for looking to me, for guidance...well that a WHOLE 'nother issue all together, because he refuses my help on almost every level, not just as a matter of quick reassurance or whatever...so that's part of his inflexibility hurdles.

Does that sound ok Mili?

KJ

peglem

10-18-2007, 08:33 PM

I'm having a heck of a time just getting Allie to look at my face at all, for any reason.

rhyanen

10-18-2007, 09:16 PM

Hey Mili, thanks for all the RDI info. Unfortunately, on the site, they don't have any listed in this God forsaken state I live in. I will have to ask around to some people I recently met and see what info they can give me.

I really hope my insurance will pay for it. What is it usually classified under?

Amy

peglem

10-18-2007, 09:35 PM

Amy, I live in Phoenix and there are 2 consultants here. The 1st one I called said there is no way the state will pay for it because RDI is classified as remediation, not therapy.:rolleyes: She bid me good luck and sent me on my way. The second one was a lot more helpful- she said BCBS covers RDI. I just found out today that we will be funded under our state provided mental/behavioral healthcare. But, the agency my daughter goes to had to figure out how to do that (they are not the agency who provides RDI) and we weren't sure if it would work or not. RDI consultants in AZ are not on the DDD provider list so the regular medicaid would not have paid for it (that's our secondary insurance anyway, and I'm pretty sure primary wouldn't have covered it). But, I was reading the parent forum on the rdiconnect website and saw that many parents were getting rather creative w/ funding. One was even getting it under speech therapy, since her consultant was a certified speech therapist and wrote the funding request w/ "communication" objectives. Not really off the mark. Also, many parents whose consultant was also a licensed psychologist got services paid by their regular insurance as mental heathcare. It seems like there is a huge variation in the way different states and insurance companies make funding decisions.

Kristen (ColeysMom)

10-18-2007, 10:04 PM

I also think that if a therapist (or Dr) wants to, they will find a way!

Insurances covers a lot and there are a bunch of state funded programs...so if you can find someone willing to find the wiggle room...squeeze through!

Can you post the link so that we can see some of the crafty ways people have gotten this to work? Maybe we should put this in another thread???

Good Luck!!!!

peglem

10-18-2007, 10:08 PM

I don't have a link. I just went to the rdiconnect.com site and went to the parent forums and read the threads that sounded interesting to me- several were about funding/insurance though. This was yesterday- before I knew that my funding was approved.

Kristen (ColeysMom)

10-19-2007, 11:19 AM

Here's the link for anyone looking for some ideas: http://www.rdiconnect.com/RDI/parent_funding.asp

peglem

10-19-2007, 12:14 PM

Well, that's not what I was looking at, but good. I was just reading the general parent forum.

Kristen (ColeysMom)

10-19-2007, 12:16 PM

I can't find a parents forum???

peglem

10-19-2007, 12:24 PM

Try this:

http://rdiconnect.com/forums/displayTopics.asp?FID=2

I went to Member services (left side menu), then message boards, then parent message board.

Kristen (ColeysMom)

10-19-2007, 01:12 PM

Thanks! WOW! I'm reading now...

OUCH!

Coley just said: Mommmmmmyyyyyyyy.....
Me: Ya, what's up?
Coley: Can WEEEEE do something?
Me thinking: EEEEEEK...I think I need to get off the PC...
Coley: Uhmmm, can you play with me?:
Me....OUCH, gotta go....

rhyanen

10-19-2007, 02:09 PM

Peglem,

thank you so much for that info. We are in NM, and there is a 7 year waiting list before my son can even get any state funded support from the DD waiver here. It's terrible.

We do have BCBS through my husband's work, so I'll have to see about insurance paying for RDI. I also tried contacting a woman who is doing RDI here in my city, so I'm just awaiting a reply from her.

We cannot qualify for Medicaid, so that option is pretty much out for us. I know alot of people take out second mortgages to fund their child's therapies, unfortunately we don't own our home, so we have no real assets.

Are there any other possibilities that you know of in the way of funding? that would be great if it could be covered under speech therapy. So how exactly is it covered under BCBS? Do they usually require pre-authorization and a signature stating the definite need for it?

Thanks!

Amy

peglem

10-19-2007, 02:23 PM

My understanding of the way it was covered as speech therapy (just reading on the RDI message board) was that that particular consultant was a licensed speech therapist, so she could claim it as such. I think under BCBS the consultant has to have a behavioral/mental health certification- psychologist or psychiatrist so it can be provided under mental health care. Here in AZ certain categories of disability automatically qualify a person for medicaid- autism is one of those. Our private family medical policy has to be the primary insurance, but many w/o private coverage use only medicaid. It seems so wrong that its different from state to state- geography shouldn't be that big of a factor. I wonder also, if you could get something through the school-they often provide therapies, ABA for instance. The problem with that is you have to educate the (often resistent to new ideas) schools on what RDI is and then they have to initiate finding and implementing a program.
Mili's consultant gave me a website where you can apply for an RDI scholarship- I'll pass it on to you as soon as I find it- but they never got back to me at all after I applied.

rhyanen

10-19-2007, 02:26 PM

Mili's consultant gave me a website where you can apply for an RDI scholarship- I'll pass it on to you as soon as I find it- but they never got back to me at all after I applied.

Thank you so much, that would be great! I appreciate all your help;)

amy

peglem

10-19-2007, 02:27 PM

Found it:

www.factfamily.org

Kristen (ColeysMom)

10-19-2007, 03:06 PM

This may not alleviate your frustrations, but it may help you to understand and perhaps even give you some ideas:

State run programs are exactly that, state run. Every state will advocate and apply for health type services from the federal government and will develop their own programs (as approved by the federal government) based on their own constituancy and the amount awarded.

In theory it makes sense. In application what happens is that some 'groups' can get the short end of the stick. A good example is FL where the primary or predominant age group is geriatric. In that state they have the best programs for that age group, but the worst for families and children.

However, that does not mean there is nothing. Often times there ARE programs, but it's difficult for US to know about them because they can't advertise or whatever like say insurance carriers can. Advertising costs money, and no one wants funds that should be spent on benefits or care going into a billboard, ya know. So it's up to us to search them out.

Anyhoo...it pays to ask around, at school, at your community centers, your EI coordinators, whoever would have exposure to some of this stuff...they are likely not experts, but could have some ideas of where you could start.

From my experience working with the state (regarding federal & state run health programs in a former and almost dreamlike lifetime once) the place I would start is right with the state itself. I can almost guarantee that you will be on the phone for a long time being transfered hither & yon, but it'll likely pay off if you can muster the patience to follow it through to the bitter end...

Amy, here's where I would start if I were you:
http://www.nmautismsociety.org/
http://www.disabilityresources.org/NEW-MEXICO.html
http://www.nichcy.org/stateshe/nm.htm

I just googled New Mexico & autism...I'm sure you could find even more if you googled childrens services, learning disabilities, special education programs, or similar terms, IF those links above don't get you somewhere.

GOOD LUCK!

Kristen (ColeysMom)

10-19-2007, 03:21 PM

Amy here's a document I found that is full of federal laws, interpretations by NM and specific NM organizations that are responsible for meeting needs of families and children on the spectrum as prescribed by the laws.

http://www.health.state.nm.us/ddsd/fit/pdf%5CAutism-Spectrum-Disorders.pdf

Kristen (ColeysMom)

12-04-2007, 11:34 AM

I paged Coley's GI this morning, and I'm waiting to hear back from him now.

Here's the deal...

Firstly, it's been 1 week now of only 1 s.boulardii/day. His appetite is nil and I'm po'd at the idea that we may lose all the gain he made. He's finally got some tush!

Last night we moved him up to 2. No appetite this am really, but he's a bit sick too. So it's hard right now to tell if his lack of appetite is partially due to his bug, and likewise any aggression he may experience from the 2 (versus the one) may be toned down...wait and see I guess...plus I'm wondering if this is die-off too...ahhhhhhhhh...I hate the constant mind boggling crap! Why can't this just be straight forward!?

Anyway, on the enzyme front...we are still waiting to hear back from the GI with lab results and his recommendations on them, but I'm feeling lately that we don't really need to wait.

I mean I want his input, but the more I think about it the more I think why wait...

because they will either help or not...regardless of lab results. He, I think, was just hoping that the results may yeild some additional clues...I guess I'm not so confident about that...they haven't so far, ya know.

The more I have the idea sitting in my head the more I think we should just move forward and get on with it:

first try the phenol enzymes, they will either help or not...but will provide some info either way.

then (if necessary) try the carb enzymes, they will either help or not...but will provide info either way.

then (if necessary) try a 'complete' enzyme....

AND, I'm reading that if there is an overgrowth issue that they help with that also...

PLUS! We are moving toward family get togethers and such, and if there is any time that I'd like to just set him free on food it would be during this time. It would be a great time to trial him, but I wouldn't feel comfortable doing that without a good reason, ya know. I mean, in the past it's been a nightmare dealing with the consequences of an exposure to things off his diet ...but if I were to feel more 'safe' in exposing him to it then I would. And I just hate how 'different' it makes him...it would really be a HUGE thing for him to be able to eat all the things his cousins do...could be a real growth opportunity too...

So I want to propose this to the GI today and order whichever he agrees we should start with.

What do you guys think? Does that sound reasonable?

BTW - remind me what you guys are doing on the enzyme front...I'm sorry I forget, and have no motivation to scour this GI-normous thread!

KJ

RathyKay

12-04-2007, 02:25 PM

BTW - remind me what you guys are doing on the enzyme front...I'm sorry I forget, and have no motivation to scour this GI-normous thread!
We went to Georgia for my BIL's wedding at the beginning of November. At that time, I did a major supplementation cut for Tom. I went down to cod liver oil, his all purpose multi-vitamin, and his probiotics and S. boulardii. Just because I didn't feel like hauling our entire medicine cabinet. (We also took along two different forms of seizure medication <just in case>, Tylenol, Benedryl, and probably something else. A lot of little pill bottles, plus I was worried about answering to the airlines.:rolleyes:) Tom is still having constipation issues, and I was wondering if his zinc (with sorbitol) was a part of the problem. So, I'm slowly adding supplements back in and trying to observe the effects.

Tom was on three enzymes from Houston Neutraceuticals (http://www.houstonni.com/): AFP Peptizyde, No Fenol, and Zyme Prime. To be honest, I didn't notice any differences when we started on them. And, I started them one at a time, one meal at a time. (Three days with just one for breakfast; three days with one for breakfast and lunch; three days breakfast, lunch and dinner; then add a second one in and repeat.) One of the moms at my DAN! doctor's said they did wonderful things for her son (I *think* it was constipation-solving for him). They just didn't do much for us. Anyway, I have not gotten around to adding them back in yet, but I haven't added most of the rest of the supplements back in either. (I had a potentially bad reaction to one of the supplements, and that always slows the process down.)

I've also just cut back on Tom's probiotics and S. boulardii. I've been thinking about Hal's bicycle versus cadillac engine and wondering if that's some of Tom's "issues." Tom has always been a laid-back, easy-going kid. Maybe I have beaten back a lot of the yeast and bad bacteria and he just has more energy and doesn't know what to do with it? It is starting to seem like I give the probiotics / S boulardii and he has a case of the giggles. This is not the first time I've fought yeast and then wondered afterwards if I fought it too long? And things improved once I quit actively fighting it.

Kristen (ColeysMom)

12-04-2007, 03:03 PM

Well I just heard back...

He likes the idea of starting on the road..and added that after carbs, we could try lipids and a protien enzyme before moving on to the complete...

Along this path it should reveal 'something' even if we see no improvements at all...it will tell us that Coley's issues are not of a digestive nature...in whole or in part, right...

So now I feel like we have a plan and I'm pumped for it...course I will have to figure out how to get these things into him! :rolleyes:

So I guess that also speaks to Tom's response, or lack of response to them as well...

I feel pretty 'encouraged' by this though...mostly because of Coley's reaction to the s. boulardii...because we are NOT seeing an ampted up Coley, one who's got a rocket blaster installed on his scooter...no-no...we are seeing jeckle/hyde type changes, so that tells me something IS going on there...

We'll see, I guess...

Kristen (ColeysMom)

01-30-2008, 11:57 AM

Well it's been about a month with the phenol enzymes, about the same amount of time with the s.bouladii and we are seeing some similar things now.

I just don't get it!!

Anyway, we've been seeing really rebelous, confrontational and combative behavior. I think I had mentioned in the thread about his behavior that we had added a bunch of things to his diet, it was slowly, but we, I guess, got a bit brave and added more & more every day. It would be so NICE if we could just eat a normal diet! Plus it was holiday season...UGH!!

Anyway we pulled back on everything and still saw behavioral stuff. And his rash is out of control! Just like with the s.boulardii...god I get SO aggrevated trying to make sense of this sh!t! WTF!!!

We saw clear blips in his behavior that corresponded with his enzymes. So the first thing I did was lower the dose per day. He was only getting 1/day so I started doing 2/3, then 1/2...his behavior isues spiked soon after the dose no matter what amount I gave him.

So one day, subconsciously or whatever, I forgot to give him any. The next day he was AWESOME! DH & I talked, and decided to try 1 every other day. And again, the day after he got it, HORRIBLE!

So now we are on day 4 without and he's been great! So now, just because we LOVE being tortured, I guess, we have started giving him a few things on a limited basis to see how he handles it (broccoli, green beans, banana).

He had green beans last night with dinner, those evil evil things! http://smileys.smileycentral.com/cat/10/10_1_11.gif

This am he seemed ok-ish. He was a bit scattered last night before bed, so there was a confrontation...which turned into a later than normal bedtime...so I'm kinda thinking that he could have just been tired this am. But of course last night could have been the beans...http://smileys.smileycentral.com/cat/10/10_1_11.gif

And again, just because I am a glutten for punishment I gave him 1 broccoli spear with his snack for school today.

So all sarcasim aside, he does seem to be doing better off the enzymes, but there is still a very real possibility that the veggies are bothering him!

His focus and behavior is better, his appetite is AWESOME! AND! drum roll please...he's favoring his meat! Even asking for more. When he doesn't finish a meal it's because he doesn't want his rice or potatoes or whatever...generally those are the first things to go! AND he's eating within a pretty normal time frame. He does lose focus a bit, but it's not until he's had a good amount first, but flits around the table and comes back on his own for more.

We see Dr. Y on monday...I don't know what to think anymore...I just get so damn confused and discouraged sometimes! BUT, our plan was supposed to be to move onto a carb enzyme next...I'm kinda wanting to go with a fat enzyme or maybe the complete. I'm tired of this. I know it's only been a couple months, and only a couple things...but I sorta just wanna go pedal to the medal. If it helps, yeah! and maybe we can try to sort it out from there...but if it doesn't then we'll know it's not digestive enzymes that is the problem, ya know? And we can just move forward.

BUT...I cannot wait for him to get weighed! We JUST bought him 4Ts at the start of school, course had to adjust the waist band to the extreme, but I think the length was pretty ok. Infact that's likely why we got him the 4Ts, his 3Ts probably fit in the waist, but not length, that's generally how it goes with him...anyway, we had to go get 5's for him...regular 5s are big, but the few 5Ts we got fit him well (with one cuff and a bit of adjustment in the waist). This is the first time in his entire life that we picked up a size that coincided with his age! :eek:

We've gone a head and booked him a normal b-day for his 5th. It'll be his first ever. He's been to a couple but we've always had to bring our own food. And he's basically watch the cake eating, although he's often just gone elsewhere to play while the kids were eating. Anyway, we're braving it. The party is actually after our visit...2/10.

I'm not sure what we will do, but right now I'm kinda thinking that we should give him the enzyme because of all the crap he'll be eating, but on the other I don't want his mood to be destroyed by it...

http://smileys.smileycentral.com/cat/36/36_11_7.gif

So a whole lot of nothin' I guess! http://smileys.smileycentral.com/cat/29/29_3_16.gif Sorry, I'm in a pissy mood!

I'll let you know if anything changes &/or what we decide to do moving forward after our appointment.

Oh, I'm going to have him tested for an allergy to aspartame, chocolate (cocoa) and I'll ask him to also test his vitmin A levels.

Remember he ran a bunch of food allergies and his blood clotted so they weren't able to be run. Well he picked just a couple last time and reran those...all normal. But I forgot that Coley had a clear skin reaction after having sugar free pudding, several times...so we don't give it to him anymore...and also I'm starting to wonder if that stupid rash is from chocolate.

Coley's ped is supposed to be 'the rash guy' I never knew this but I'm hearing it from other moms...so if he's still got it when we get to his well-vist appointment (2/13) I'm going to ask him what he thinks it is.

Ok, THAT's it...

Kristen (ColeysMom)

01-31-2008, 09:54 AM

Ok, just a quick note...and after reading you can all smack me...because I just feel like the BIGGEST idiot!

I had all sorts of quams about giving you guys an update, seems like every time I do, the good ones anyway, some how it jinxes things.

So last night while Coley was spinning out of control as if he was on speed or something I just wanted to rip my own arm off and beat myself with it!

Coley likes frozen yogurt pops, of course we make them ourselves to avoid the fructose. But since using the phenol enzymes we've been making them with unsweetened cranberry juice for flavor and adding a little glucose to sweeten. No biggy.

Well yesterday when he got home from school (11:15am) he said he wanted a little snack, that he was hungry but not ready for lunch. So I scoured the fridge for something, I didn't want to just give him crackers. I've been making real efforts to keep his carb level in check. So I spot the last 1/2 pop in the freezer that he had started last week but didn't want to finish.

Let me just tell you a bit about this 1/2 pop too...

It was probably in total 1/4 of a cup...when I made the batch last week it put about 2/3 of a dose of enzymes into each. So this 1/2 would have had only 1/3 of an enzyme dose. And the amount of cranberry (cranberries are VERY low in fructose, but) would have been about 1.5 TBL...

and a little reminder, it's been 4 days since any enzymes...

All night long he was loud and out of control! We had a hard time getting him to be still or quiet, and dinner was a nightmare! http://smileys.smileycentral.com/cat/10/10_1_118v.gif

When he went to bed he told DH that he was SOOOOO tired but felt sick. DH said his mind was racing that he just wouldn't stop talking and relax.
http://smileys.smileycentral.com/cat/10/10_1_118v.gif

GRRRRRRR! This am he's still a bit wired.

But I'm thinking I NEED to sort out definatively what this was all about before our appointment Monday. So my plan is to give him a small cranberry smoothie tomorrow after school same ingredients minus the enzyme. http://smileys.smileycentral.com/cat/10/10_1_118v.gifHopefully we don't see that sort of a problem, but if we do, you can find me at my new home, the funny farm!http://smileys.smileycentral.com/cat/23/23_29_111.gif

Kristen (ColeysMom)

02-01-2008, 09:11 AM

Ok, so yesterday Coley was still hyper and edgy. Funny though how much more patience I have for it when I can blame something for it...like it's not just HIM being difficult or whatever.

His eating was pretty bad yesterday too. He had a pretty good amount to eat, but it was largely dairy and some carbs...getting him to eat meat was like pulling teeth! I tried to encourage things but he was just grabbing stuff, including a pint of Hagaan Daz...he polished off 1/2 the container while I wasn't looking :eek:

Anyway, this am he's a bit flighty and hard to keep on task, but he's holding conversationss more appropriately. So just wanted to ask you all for a Hail Mary cuz in a couple hours I'm going to give him that smoothie!

RathyKay

02-01-2008, 02:00 PM

Ok, so yesterday Coley was still hyper and edgy. Funny though how much more patience I have for it when I can blame something for it...like it's not just HIM being difficult or whatever.
I completely understand this. Tom has always been a lousy sleeper, so when it came time for potty-training, nighttime accidents were NOT a problem. And then, he started having accidents. Maybe one day a week, and they slowly increased until he had a 50-50 chance of staying dry. On top of that, he was sleeping worse and worse. I was sooo annoyed at having him wake up, go to the bathroom (and do nothing), go back to bed, only to have him wake up wet an hour later. ARGH! And then someone started a thread over on the Epilepsy forum. Turns out, this is a side effect of the med he was on. When things got really bad, he was on a high dose (we were struggling to beat back the seizures). Once I realized he had no control, I was definitely more calm. And I bought him pull-ups for the first time, to make my life easier.
Anyway, this am he's a bit flighty and hard to keep on task, but he's holding conversationss more appropriately. So just wanted to ask you all for a Hail Mary cuz in a couple hours I'm going to give him that smoothie!
You're a braver woman than I. I'd wait a few more days... gather up my strength and courage. Let us know how it goes.

Kristen (ColeysMom)

02-01-2008, 07:40 PM

I know Kathy, but I had to try to isolate the problem before Monday's appointment with the GI.

So I'm happy to report, so far so good! :D

He's definatley STILL a bit hyper, and OH!!!!! Forgot to mention his eyes have been pretty dialated since the stupid pop!

But tonight he is better than he was this am...so I think I can now confidently say that the enzymes are making him wired! Now THIS time I could definatley agree that he's on rocket fuel, ya know...

He's soaking in epsom salt now, which generally gets him all calmed down...

Keep 'em crossed, I'll let you know if anything goes haywire!

Kristen (ColeysMom)

02-07-2008, 10:07 AM

Ok, just a little update on our apt Monday...

Coley gained 1+ pounds over 2 months! That brings him to 38.2...I guess I was being a bit too optomistic thinking he'd break the 40 pound mark :rolleyes:... he gained over 2 pound at the previous follow-up, so I was kinda hoping...but hey a pound is a pound! And Crikie I don't think he gained a whole pound in the previous year and we're looking at over 3 pounds in 6 months!

Anyhoo... the decision was no more enzymes. He wants to see how he does without. Still wants us to be careful but to continue to introduce more things. As it stands now he's tolerating 1 fruit and 1 veggie per day without any major problems. He said to continue that way, but to try to get more variety in. And for sure the more meat he eats the better! This week we added peas and (hold your breath) apples.

He also wants to get him off the vitamins eventually. He wants his body to naturally crave what it needs. But for now he wants us to continue with them. And basically set a follow-up for 6 months out. But asked us to page him if there are any issues.

So once he said that I didn't even want to raise the whole vitamin A thing. And it was late so I just didn't feel like dealing with the blood draw so decided not to even ask for the allergy testing...don't think it's really necessary anyway!

As for the rash..."OH BOY, that's a good one. Is it food related? Probably. But I've never seen one like that before. Raise it with Dr. V (his ped) if he'd like to discuss it have him call me, a referral to a derm may be necessary."

Okee-dokee! :confused:

I guess I didn't really expect that he was going to be able to spew something out about it, but I HATE that 'geez never seen that before' answer...that seems to be a reoccuring theme in Coley's care! But I gotta avoid letting THAT bother me. Hopefully Dr. V will have an idea next week.

Dr Y was funny...he just looked at Coley astounded by his progress over the last 6+ months. He said "I wish I could take credit for this" I told him, sure it could be a coincidence, but we've been struggling for a long time and everyone is talking about how amazing he's been doing...I REALLY think it is/was some sort of overgrowth. But the rash (plus his hyperactivity & focus issues) have me concerned that it's not all hunky-dory. He just shook his head.

He asked about school and I told him that we are considering reg-ed, and he thought we should definately push for it. He thinks that his behavior issues may have something to do with boredom...

Not that he's a Coley expert...but it's an idea I never considered...and something my brother had a REAL problem with throughout school.

So, in general an encouraging plan moving forward I think.

And oh, I picked up the cod-liver oil capsules and the Omega 3-6-9's... I'm alternating 1 or the other each day along with his multi-vitamin and the mag/cal/zinc/d. Today was his 2nd A.

Kristen (ColeysMom)

02-16-2008, 08:45 PM

Pegs,

Have you ever tried enzymes...I know you've probably already answered this for me a half dozen times, huh?!

It seemed like they might have worked more effectively than the s.boulardii. We did hit a bump, and I don't really want to spread this conversation over another thread...but we ended up having to give Coley a dose at 2 weeks off...and he snapped right out of it!

I'm now thinking that it might be worth a try at a protien enzyme.

I'm thinking that the phenol enzyme may have cut through the yeast, and perhaps a protien may get through any bacterias that might be present, including what I'm thinking is now running ramped and causing the rash...

maybe mixing it up for you guys might help???????

RathyKay

03-11-2008, 02:07 PM

My turn to bump this thread. I posted this link on Peg's Allie & Bethanecol thread last night: http://www.eklhad.net/adhd.html I found it really interesting. I guess I like to read other people's journeys and see how they think, and what they've tried. I read through that whole page last night. It's very long. It's mostly about his adopted son and trying to battle ADHD through diet (and using meds when diet isn't enough). His daughter and adopted daughter also have issues, but not as severe as his son.

Anyway, some of what I read rang bells in my head, thinking of Allie and Coley. This guy has tried gluten-free and dairy-free several times. He's looked at Candida (yeast) several times, tried avoiding salycilates and amines. Everything seemed to work for a bit and then go sour. Some of the things I found interesting..

*Smell... he noticed his son smelled like stale fermented grain when things were really bad. Sometimes, he only noticed a faint whiff; other times you could smell him from across the room. After some research, he decided it was butyric acid.

*After much time and experimentation, he decided there was not one underlying problem, but probably two (and hopefully not more). His son seems to have a glutamate sensitivity and a bacteria overgrowth. When they did the glutamate diet, that restricts fermented food, but allows carbs. However, the carbs feed the bad bacteria, which does its own fermenting. Both need to be addressed at the same time.

*He discusses differences in yeast problems versus bacterial problems and what that means for your diet: http://www.eklhad.net/adhd.html#ground

*From the section above that http://www.eklhad.net/adhd.html#germ he makes some interesting sugar observations, as far as his son is concerned. I'm slowly starting to decipher the sugar connection. It doesn't matter how much sugar he eats; it only matters how much sugar reaches the colon. And oligosaccharides always reach the colon, every single gram. He shouldn't eat any of these, period. No wonder the failsafe diet was such a disaster. It is replete with wheat, oats, cabbage, brussel sprouts, rutabaga, and lots of legumes, a veritable cocktail of oligosaccharides. So I gave up on the failsafe diet and started counting carbs, but I was still serving lots of low-carb vegetables and legumes. These all contain non digestable oligosaccharides (NDOs), which pass straight to the colon and feed the bacteria.

*Dangers of probiotics... does this apply to S. boulardii? (my bold) http://www.eklhad.net/adhd.html#proto The latter suggests that protozoa actually eat, and thrive on, the good bacteria in probiotics, hence probiotics can make the patient worse. You need to grow your own good bacteria. You can't call for reenforcements. And the only way to grow your own good guys is fiber. I keep coming back to fiber. It saved my wife's life, and if I can get the formula right, it will save my son as well.

Of course we've tried high fiber diets before. With my wife's history, fiber is one of the first things I tried. But there are subtle differences between individuals. My wife didn't mind the oligosaccharides that are present in most high fiber foods; but my son can't tolerate them. In other words, his protozoa thrive on the complex sugars present in legumes and leafy vegetables. Perhaps this was not the case with the bacteria that colonized my wife. Each microorganism is different, and the treatment varies accordingly. We need to look to whole grains for our fiber, setting most legumes and vegetables aside. I put John on a low sugar, low oligo, whole grain, high fiber diet. It seems to be helping, but I've said those words before, so time will tell.
Unfortunately, he still hasn't found the cure-all for his son. Although, maybe he has. His son is old enough and capable enough to eat whatever he wants and compliance with the diet is a huge issue. He can buy the school lunch with his own money. He can ride his bike to 7-11 and buy more junk.

Another interesting thought was on the timing of the foods. What is safe in the morning may not be in the evening I really think his son needs to go low carb and stick with it, but compliance and whatnot...:rolleyes: Anyway... http://www.eklhad.net/adhd.html#timing (my italics)
All this makes perfect sense if you think about it. I should slap myself on the forehead and say, "You idiot! Why didn't you think of this before?" Digestion comes to a virtual standstill when we sleep, but the bacteria never sleep. The carbs just sit there and ferment until morning. Then, after breakfast, the byproducts pass through his colon and into his blood stream, out of his lungs (where we can smell them), and into his brain (where they create insanity).

Anyway, when you have *lots* of time, I recommend reading through it. You might find some ideas that help your kids.

peglem

03-12-2008, 02:02 AM

Thanks for the link Kathy. Geez, that guy makes Mili seem downright terse! I scanned through and read the parts that seemed to fit...no way would I have stuck to the diet attempts for that long, especially since they seemed mostly to fail and they didn't know for a long time it was because the kid was sneaking forbidden foods. I need to go back and sort of note things that I want to get more info on.

Kristen (ColeysMom)

03-12-2008, 10:30 AM

Kathy thanks for this link! I haven't had time to look at it too much, but it DEFINATELY sounds familiar!

Without looking too much at it, one thing that we've seen is short term improvements with LOADS of things too. The only thing that has stuck has been the fructose...but it doesn't quite clear all the issues.

We persisted because the changes were SO profound, even if short, we just kept reaffirming that something in the foods was causing the problem, so we kept trialing & tweaking....and still do, as you know.

Sneaking stuff might be part of it, but not all. We certainly have had our share of slip-ups, but even beyond that things that should be relatively safe seem to compound over time and cause problems too. It's really hard to tease out. But when you see such dramtic results initially it motivates you to push harder.

At this point I am starting to believe that there is something inside him that needs to be irradicated too.

I don't know if this makes any sense, I haven't really looked at it, but with all that we have been through it's the 'explanation' that seems to make the most sense in my head at this point.

I think the s.boulardii took care of one thing, the enzymes another, and now things are out of whack in a new way. I even wonder if something is now thriving that wasn't before...or that maybe thrived periodically previously...whatever is behind that rash maybe!

His rash is out of control, and his focus issues are a problem...but they both fluctuate. I need to look more into the ideas on that site to understand the whole concept of overgrowth in the colon...I don't get the difference???? I mean I get the locality thing, but why things react in different places doesn't make too much sense to me right now.

We have been testing foods recently and he seems to be managing them well, or atleast better than he used to. We aren't seeing nighttime disturbances or any LBS episodes or depression.

Making things even tougher to tease out these last few weeks (since eliminating the enzyme) is the fact that he went overboard for his b-day, he got a polio vaccination at his 5yr well check and we've had a bug in the house. He also lost one of his tubes...not sure if that had to do with the bug or if it was an additional thing.

Anyhoo...in someways he's advanced since all that, and in others he's regressed. We've got some bad habits again that seem to be impossible to get back on track...mostly around eating and sleeping...from changing things while he was sick. But his processing seems to be a bit more fine tuned as well. Which in someways (given his normal M.O.) has made things more difficult behaviorally.

One thing that remains clear is that tipping the balance between carbs & meat based protiens gives way to more defiant behavior. Has that guy ever tried the paleo diet? I must sound like a broken record...I've just got to bite the bullet and try it!

We don't see the GI again until July, but I'm right now thinking that I want to try another enzyme...I'm just not sure which (fat, carb or protien). But my thinking is that if there is some microbe in there...if his system was operating properly it would be kept at bay through digestive type defenses...so something might be functioning underpar and need an enzyme to assist...who knows though if things go 'normal' after that (assuming this is true of course) like is ther an underlying problam that alloes an overgrowth to establish itself, OR is the overgrowth itself the cause of all the problems?

Whatever, my goal lately, in the absense of enzymes or whatever, is to try to build an 'iron stomach'...I just keep pushing the meat and it DOES seem to help.

I am also alternating the Omega-369 and the vitamin A, along with his other supplements. Allowing 1 fruit (apple or banana) & 1 veggie per day (peas, broccoli or spinach). But also allowing a sugar (as in sucrose) item too, generally this is a yogurt or ice cream.

The rash is NOT going away with the suggested hydrocortizone, if anything it's getting worse...he's constantly itching! But I'm petrified to call the Dr about it because I don't want the antibiotic! I'm about ready to smear yogurt on his body :p We see Audrey's doc 4/4 and again in August...at one of these appointments I'll need to speak up about it, if not before.

His ears have been WAY clogged up too...he's been complaining about things not being loud enough (TV & PC) and talking VERY loud! I'm in the process of getting appointments scheduled for the ENT & audiologist...my gut tells me that his ears may be adding to his behavior. I'm sure I've mentioned here somewhere about the strange wax stuff...right now I'm crossing my fingers that the tubes have been the irritant all this time and not the food (as far as the wax goes)...we shall see!

Kathy, have you shared that link with Hal? I bet he would love it!

I think that more or less sums up where we are at on this whole topic...but I've been struggling with a host of other crap too... I tried posting yesterday and somehow hit a wrong key or something and lost a ginormous post that I just have little energy to retype... I need to update on his behavior/compliance stuff and school too.

RathyKay

03-13-2008, 04:36 PM

I need to go back and sort of note things that I want to get more info on.
This is where I goofed. By the time I realized just how long it was, I didn't think about taking a couple of notes. I did a lot of searching trying to dig up the pieces in my previous post.

I guess the other thing here is that making diet changes sooner is better, while you can still enforce them. I also got frustrated with all of the trialing he did. "Day off school tomorrow. Eat this and we'll see what happens. Oh! Bad day. I had to physically restrain him." I kept thinking "Quit testing him! Give him a chance to heal!"

So Kristen, are you waiting for summer to go Paleo? We're fairly low carb Paleo. I think it's really helping Tom's immune system. He doesn't seem to be catching everything and it doesn't seem to last as long. AND he hasn't had a febrile seizure in a very long time! (How do *you* measure success?:D) I'd like to run the vitamin / mineral level blood testing through our DAN! doctor again ($$$) and see how he's doing.

Kristen (ColeysMom)

03-14-2008, 10:04 AM

Kathy can you get a GI or the ped to do the vitamin/mineral screening???

I don't know what I'm waiting for...I guess for starters I dont' remember all the details. Which veggies are ok (green leafy??) and nuts are ok right? But also I'm worried about taking away grains. I just don't know what I'd do without pasta, bread & crackers. I remember it being SO hard without those things, just can't imagine how hard it would be to feed a kid without them! So I guess fear is stopping me.

Can we talk about this rash for a minute. I know it's not exactly on topic, but it's really bugging me!

Does it make sense that it's NOT bacterial? It's been around for years, coming & going. It used to stay isolated to his but when he was smaller, so I thought it was some kind of diaper rash. It's NOT on his front. He's been #2 potty trained since 4yo, and this is when I REALLY started to worry because I couldn't blame poop anymore.

For the past 6+ months it's been creeping down his legs and up his back. On bad days there are visible RED welts all over his bum, down his legs and on his lower back. On the average day it's pinkish and only on his cheeks. It seems like it comes out screaming and settles down, but the itch doesn't go away for him even when the welts have withdrawn.

This morning you could see almost nothing but he was scratching like a mad dog and talking about it. He said the worst part is that he can't reach the itch at the top of his back. And he's saying he wants the itch to go away and doesn't understand why Goddy put it there :eek:.

All this was said without me bringing it up. I was trying to get him dressed for school but couldn't because we had to have this routine scratch session. While he was scratching he was saying this. I just sat there holding his pants and waiting for him to be done so that he could put his leg in.

Ok, so I'm thinking if it was an infection, it would take over his body or something. He'd have a fever??? Or maybe that's the problem. But it can't be bacterial can it? Maybe some sort of allergy???????

Should I try a benadryl cream?

Or at this point should I just go for bust and insist on the immunologist???? Peg's I'm sorry, can you remind me again...rhumatologist?

Ya know, there's another thing too that I've kinda been ignoring but now I'm starting to get a little concerned. First off let me tell you that Coley seems to have a REALLY high tolerance for pain. I'm sure that it's a sensory thing. When he falls or hurts himself he bounces back up and says 'I'm ok' even with the worst falls. He does cry sometimes, but I get the impression that his cry is more of a dent to his ego or a fear thing than a pain thing. But even when he crashes hard, and does cry, it's short lived. Then he wants NOTHING to do with any sort of first aid...even when it's necessary.

Until the other night I just shrugged it off like he's got a high pain threshhold AND about how he HATES making mistakes. Just all about him, and not so much about any sort of concerning sensory disfunction. Well get this...

He had a paper cut on the inside bend of his index finger. You know how those sting right? Well he kept talking about it now & again over the course of about an hour and FINALLY entertained the idea of having a bandaid....which he had to put on himself. No biggy, it's just a paper cut right, once it starts to heal the sting will be gone & he'll be fine. Well he he was helping me with dinner and the bandaid got soggy, and fell off while we were eating. He insisted on a new one WHILE we were eating. Which to me felt more like another stall tactick (sp), but nonetheless I gave him the box and urged him to finish his meal.

We were finishing up dinner when I noticed that the tip of his finger was SO blue it was almost black. I FREAKED out and wanted to get those bandaids off him ...he put 3 little ones on...but he wouldn't let me. He was literally oblivious to the problem, even after we called his attention to it. Just couldn't understand WHY it was so important to get those off. He was crying because we were so abrupt with him, but did manage to get them off. Immediately the top of his finger went red, and so did the part that was bound so tight with the bandaids...infact it even puffed up some too. I'm sure it was throbbing. DH asked him if it hurt at that point, "no."

So now I'm like WTF!

Ok, so back to this 'other thing' ... he complains about his legs hurting him from time to time. I haven't really worried about it...when I ask him about the pain he tells me it's behind his knee...I'm thinking growing pains???? Even though until recently growth has been a REAL issue. I offer pain meds, but mostly he refuses...so I figure it can't be too bad, right?

Course now I'm thinking the pain must be pretty bad in order for him to bring it up. Sometimes he says he needs to wait because he can't walk...which I NEVER believe :rolleyes: And now I'm even wondering about his insistance to be carried each morning...which generally seems to be the time that he complains about it. On a few occations I've notice that the back of his knee almost looks bruised....but shrugged that off too thinking if there was anything REALLY wrong there that he'd tell us.

Plus, I had excruciating pains behind my knees growing up...I was told 'growing pains' which I know is also a term like 'colic' basically means some unidentifyable problem...but there's nothing really to be done about it. Nothing helped my pain, so I'm thinking not much can be done about his, and if he's not freaking out or whatever, there's no real cause to push the panic button. Afterall I lost MANY nights of sleep, AND was kept from LOADS of activities because of it...Coley's nowhere near that. But now with this new perspective of his 'pain tolerance' I don't know what to think?????

And I have no real reason to think the 2 are related, but for the fact that they both involve his legs. And that he seems to be complaining a bit more frequently these days, AND the rahs is at it's worse.

Ok...thoughts?

RathyKay

03-14-2008, 02:17 PM

I'm no expert on rashes... just wanted to throw out dermatitis herpetiformis... the other "DH" on the gluten sensitivity forum. It's a rash associated with celiac disease and gluten sensitivity. I'm not quite sure why you think it's not bacterial, but I know some rashes can be yeast-related, so I don't have a problem with you saying it's not bacterial. I do wonder how much of the rash is tied to the state of his intestinal tract. Anyway, I would definitely start with a dermatologist and see what he says.

On the bandaid... was it swollen because he had it on too tight (you know kids:rolleyes:), or are you thinking possible latex allergy?

I always thought growing pains was a dairy intolerance. I can't remember where you are on dairy right now. (Tom is home sick and I'm bopping back and forth on this post. Sorry if it's more incoherent than normal.:D) Dairy isn't allowed on a Paleo diet (those wild animals wouldn't sit still to be milked).

Going along with aching joints... gluten sensitivity is also associated with rheumatoid arthritis.

We tend to do a lot of LaraBars for snacks these days. Our Whole Foods sells a zillion flavors of them. Plus, if I buy a case, they're much cheaper than I've found elsewhere (believe it or not... we are talking Whole Paycheck). https://www.larabar.com/secure/index_.php Actually, Coley probably can't handle the fruit in them.:( How about jerky? That's next on my list of things to attempt "cooking." And lots of nuts?

Paleo Diet http://www.thepaleodiet.com/faqs/ Our library had the book by Cordain. I recommend checking it out. It's a pretty quick read - half recipes. Basically, no grains, dairy, legumes and starchy vegies (potatoes, sweet potatoes, rice, corn). Leafy greens are fine.

I believe figuring out his food issues will greatly help his sensory issues. Tom used to over-react to smoke detectors (when the batteries were dying). Granted, I don't like them either, but his reaction was extreme. Since making all these changes, his reaction strikes me as more normal. The other thought is have you done the sensory brushing (can't remember the name... CJ?) with him? Tom had sensitive hands (didn't want to touch anything) and brushing and joint compressions greatly helped him. Now you got me thinking (uh-oh!). I wonder if some of that fits in with peripheral neuropathy and gluten sensitivity? I have a lot of questions for God when my time comes.;)

On the vitamin / mineral testing... we don't have a GI. Tom isn't bad enough to qualify for a referral. And, we're on our third ped. I've kind of given up on mainstream medicine:o, so I really don't have the relationship with him that I had with the other two. (They left the practice.) I'm not sure if the current ped would order it up or not. And after talking with our DAN! doc after the first go round, I don't think the ped would recommend much in the way of supplements based on our results. "It's not too far out of range" versus "let's try to get it in range and see if it helps." And it did.

Kristen (ColeysMom)

03-14-2008, 03:24 PM

Ya I gotta admit that while I was typing gluten sensativity kept running through my head too. Just ANOTHER reason to try paleo...ugh!

The bandaids were too tight & cutting off the circulation to the tip of his finger. It was SO tight that within about 20 minutes the tip of his finger was bluish-black. He absolutely should have noticed some discomfort before it got that far, but even when WE noticed he said it didn't hurt. And then after they were removed his figer quickly swelled up and turned pink from the bandaid area to the tip of his finger. Even then he said it didn't hurt...I'm sure it was throbbing.

I don't know what to think about his rash, exactly, but I have this nagging feeling (which could very easily be wrong) that if it were bacterial that it would have exploded by now. I'm talking years that we've been seeing this thing. His old ped, before Coley was 2yo gave us a prescription hydrocortizone that exasporated it, I forgot about it until we tried the 1% that did the same. His old ped thought that he may have been having a reaction to something in the base of the prescription (and perhaps the diaper cream) so asked us to use this other stuff that was like whipped pretrolium jelly to keep 'stuff' from coming in contact with his bum to see if that helped...it didn't and seem to also make things worse.

It was then that we tried the epsom salt soaks and that seemed to help the most...but lately it doesn't seem to be as much.

From everything I understand about infections, if the body is unable to beat it down it just gets out of control. This is literally 3+ years.

And it's only spread off his bum since we started treating for overgrowth...coincidence?

And btw, it's not near his anus (sorry for tmi) so it doesn't seem like it's a thrushy type thing...it's on his cheeks, back of his legs and up his back. It's pimply some larger than others. He says it's itchy and it hurts.

His current ped thought it was foliculitis, and suggested the hydrocortizone 1%.

I still have my neaderthin book, just need to dig it out...gluten is a protien right?????? Maybe we should try a protien enzyme?????

On the vitamin screening, I think you could ask any doc to run the labs. Then just take the results to your DAN! doc so that you just need to pay for the advice, versus paying for labs that should be covered by insurance on top of that.

Does your current doc know that Tom is on a special diet? That could be your 'excuse' for ordering the screening. Like, you know it helps (the diet that is), but that you are worried (perhaps unnessecerily) about his vitamin levels. Before pumping him with more of anything, it would make more sense to run labs right????

RathyKay

03-19-2008, 02:38 AM

I don't know what to think about his rash, exactly, but I have this nagging feeling (which could very easily be wrong) that if it were bacterial that it would have exploded by now. I'm talking years that we've been seeing this thing. His old ped, before Coley was 2yo gave us a prescription hydrocortizone that exasporated it, I forgot about it until we tried the 1% that did the same. His old ped thought that he may have been having a reaction to something in the base of the prescription (and perhaps the diaper cream) so asked us to use this other stuff that was like whipped pretrolium jelly to keep 'stuff' from coming in contact with his bum to see if that helped...it didn't and seem to also make things worse.

It was then that we tried the epsom salt soaks and that seemed to help the most...but lately it doesn't seem to be as much.

From everything I understand about infections, if the body is unable to beat it down it just gets out of control. This is literally 3+ years.

And it's only spread off his bum since we started treating for overgrowth...coincidence?
Sorry, meant to reply sooner. Girl Scout cookies are finally over! Yes, we sell the stuff, just don't eat it.:o I helped out in five (5!) cookie booths this year. In addition, I'm sewing a costume for Claire's musical. I haven't sewn anything beyond Girl Scout badges and minor hemming since ??? high school? It's going okay, but very slowly.

Anyway, somewhere I read that when you're detoxing, the skin is one exit for the toxins. So, it makes sense that things are worse if you're trying to kill off yeast and / or bacteria in the gut. It also fits with epsom salts helping, as they help pull toxins through the skin.

I'm not sure what to tell you to do about it. Maybe go Paleo.:D Hard to fight overgrowth if you're feeding it lots of sugars and starches in the first place. Although, you're not doing sugars, right? Just the starches?

Kristen (ColeysMom)

03-19-2008, 09:41 AM

Well he's now getting 1 fruit & 1 veggie a day, most days, and yes starch. But funny lately he hasn't been eating so much starches.

It used to be that he would eat his potatoes, pasta or rice first and then ask for more before touching his meat...and then often not finish it. Since we've been really emphasizing the importance of meat, he's been eating all that and often leaving his starch untouched. I haven't been insisting he eat it either...just because of the whole overgrowth possibility. BUT he will go a bit overboard on the veggies.

Last night was a perfect example, I made drum sticks, rice & peas. He ate all his peas first, then asked for more. I insisted he eat his chicken first. He did, then he had another tablespoon or so of the peas, then asked for another. And never touched his rice. I DO try to minimize the veggies and the fruit when he gets it though. Slices of apple versus a whole one. A small portion of broccoli (a couple spears) etc. In total he probably had about 1/4 cup of peas last night.

The other thing he's getting lately is yo baby yogurt and Haagan Daaz vanilla. Not every day or anything. And then when he does have it, it's only 4oz.

I actually think the milk may have more to do with it. BUT even on days he doesn't have milk it doesn't go away (or calm), but it does seem to flair up when he does have a good amount of dairy.

Gluten does seem like it could be a possibility too, BUT what doesn't make a ton of sense to me is that it's worse now than before and he's actually eating less, consideribly less.

So in that way, detox does seem to me to make sense. So how do I help that along? More enzymes? But which ones?

And then the creams and stuff seemingly making it worse would make sense too...holding the toxins in, sorta, right?????

I guess I should contact Dr. Y, huh? UGH!

We have his reassessment appointment with the developmental clinic next week. I'm SO nervous! But am thinking we will end up with a new Dx, ADHD or ADD.

I'm still waiting to hear back from Otolaryngology for his ENT visit & audiology testing.

I can't help wondering how much his hyperactivity would settle if we could get rid of the irritating rash AND eliminate the wax! They won't recommend anything routinely for the build-up though...only suggested routine cleanings, UGH!

Well, I'll update you more on that later...

Kathy, I used to sew all the time, when I was younger. I used to LOVE it and had a machine & all. I used to crochet & knit too...all my stuff is long gone now, but I've been interested it picking it up again. I'm waiting for a used sewing machine to pop up in our community paper for sale. It's pretty good with stuff like that, DH got an almost new grill and lawn mower WICKED cheap when we first moved here. So I've got my fingers crossed... Good luck with the costume, I know it would be slow going for me too...but I'm SURE it'll be beautiful!

Kristen (ColeysMom)

04-01-2008, 11:34 AM

Just a quick update...

Just spoke with Dr. Y. It normally doesn't take him this long to get back to me, it seems he didn't get my message, but called within 30 minutes after I paged him this a.m...

Anyway, I discussed with him Coley's current state, rash and mindset. And I urged him to touch base with Coley's ped so that they could compare notes on each of their most recent appointments with him.

I haven't had a chance to tell you about Coley's 5 year well check...OMG! It was a total fiasco! Firstly he had his kindergarten screening that morning so I know there was some anxiety at play, but he was absolutely impossible to control.

- He refused all exams! We had to return for his vision screening, and had to make specialist appointments for hearing (which is in process now). Refused to be weighed, etc.

- He was bouncing ALL over the place unable to focus. Was climbing under the exam table and pulling out all the Drs supplies.

- He refused to go to the bathroom and ended up having an accident.

- When Dr. V asked him to write his name it was not even recognizable as his name (not sure if that was ability or noncompliance).

He just couldn't stay still and I was completely embarrassed!

This is in sharp contrast to his visit just 9 days earlier where Dr. Y threw his hands in the air in disbelief at how 'organized' and well behaved he was. Declaring his non-compliance issues a cry for a challenge.

So I will be glad that both these Drs can finally get a clear picture of the extreme's that we deal with, particularly where the big upset between the 2 visits was the b-day party and the decision to stop enzymes.

Ok, so back to point...we talked about a couple things. Particularly the idea of going back to the next step in 'the plan.' Dr. Y is starting to consider scoping Coley's digestive track, but I am VERY nervous about meds with him. We decided to go full tilt on the enzymes to see if we can get him to a stable place. If so, then we can try to tease out which/what is the problem that is being rectified with the enzymes, if not we will discuss the next course of action...likely a scope. Although I think I'd like to talk a bit about immune issues...but we'll cross that bridge when we get there I guess.

Ok, so me & DH came up with 2 ideas, going with the Gluten enzyme, or going with a complete...

Dr. Y suggested we do both particularly if the complete didn't include the gluten.

I double checked them and the complete didn't include all or as much so we are going to do both:

http://www.kirkmanlabs.com/products/enzymes/enzymaid/H_EnZymAid_90_Spec043.html

http://www.kirkmanlabs.com/products/enzymes/enzym_dppiv/Enzym_Complete_II_Isogest.html

I ordered them rush, so hopefully I'll have them by Friday.

My guage will be that frickin rash that seems to be amping itself up lately!

Oh btw, did I mention that his appetite is HORRENDOUS! And he's leaning on carbs and dairy again, BIG TIME! So obviously that's a thermometer for us as well!

I'll let you know how it goes!

peglem

04-01-2008, 02:21 PM

Don't be embarrassed! Allie's very good pediatrician listened to me well and believed me, but didn't really get the full picture of what I was saying until he witnessed some severe episodes. The day he bragged to his nurse (after she burst into the room to see if we needed help- 3 of us rassling with Allie caused quite a ruckus) that he didn't get bit. That was the day he really knew what I was dealing with...it helped.

Kristen (ColeysMom)

04-01-2008, 02:30 PM

I know I shouldn't be embarrassed...and I HATE that I am, it just doesn't feel right...but somehow I feel as though it's some sorta reflection on me or something...I just feel so damn guilty sometimes!

Anyhow...I gave him a phenol enzyme in his chocolate milk for school. He seems much more organized in thought this afternoon, but he's VERY energenic!

peglem

04-01-2008, 03:05 PM

But, you've been telling the doc.s this for a long time- if he comes in a model of civility they begin to think you're just an over worried mom who spends too much time on the internet. Now you've got credibility!

Kristen (ColeysMom)

04-01-2008, 03:29 PM

I know Pegs, and I love you for trying to make me feel better about it...it's just one of those things...I TOTALLY know that in the end this will be good for the 2 of them to REALLY understand the extremes, particularly since he moves to the extremes so easily...it pretty much proves that "something" is influencing that...but somehow it bugs me that after ALL this time I STILL can't keep him even, whether that is through biomedical interventions or good parenting skills...it just isn't getting better. Well it is & it isn't...you know what I'm saying...and it totally stinks that I can get him normal enough that he is aware that he's missing out, but then I include him and BLAM!

Tell me something good...I've been doing taxes, UGH & and that whole mito article has me completely bummed...how's Allie doing on the bethanecol?

peglem

04-01-2008, 03:39 PM

By Kristen: how's Allie doing on the bethanecol?

Amazing-I'll post more later when I have time.

RathyKay

04-02-2008, 12:35 AM

Kind of reminds me of this old thread on Child Neuro: http://brain.hastypastry.net/forums/showthread.php?t=16349
I think seeing her actual full blown episode helped a lot.
The other thing going on behind that thread is that another doctor not long before had questioned whether Rachel was faking her vision issues. Anyway, I completely understand the embarrassment. It's hard not to take it personally, even though you know Coley can't control himself under the circumstances.

I remember Claire when it came time for the vision and hearing exams. She wouldn't cooperate either. She wasn't wild or anything, just kind of hanging her head. And now, she's my social butterfly.

Have you ever read "Is This Your Child?" by Doris Rapp? (Our library has it, and I ended up buying it.) She writes about allergies and how they can "look" in kids. There are some examples of kids not being able to write their names and scribbling all over the paper after being exposed to whatever personal allergen it was. After giving the child the "antidote," they went back to being fine and being able to write their name again.

Is the anxiety part of reaction? I mean, when things are going well with Coley, is he anxious? Or is the anxiety one of the effects of whatever is going on when things are bad for Coley?
and it totally stinks that I can get him normal enough that he is aware that he's missing out, but then I include him and BLAM!
I'm assuming you're talking food. You need to find some safe treats he can have (or that he can have a small amount of) without causing problems, and then stick with those. Life isn't fair.

Kristen (ColeysMom)

04-02-2008, 10:19 AM

I'm not sure if anxiety is part of it...I think depression is, he gets pretty withdrawn. But he was nervous that day and I think that gave him a lot of energy that he didn't know what to do with. He was nervous because of his kindergarten screening...I found out later that he thought he was going to kindergarten that day and was really confused because he didn't see other kids to play with and stuff he was used to seeing at school.

He normally doesn't do soooo hot with new stuff, he's past the outburst part (on a good day) but he's hesitant & cautious. When he's in a bad place he's defiant & confrontational (about everything, but a new thing is HOLY CRAP!).

I didn't get to update you guys on this either...the screening was held at the high school library. There were some HSers helping out, and then there was a lot of administration booths. One for the nurse, one for eligibility, one for finance, and then a section for assessment of the kids and another section for a hearing screening. Coley was taken away to be tested & screened, while me & DH met with each administrative person.

I had told Coley a head of time, not only right before it but also for a couple weeks before hand that he was not going to preschool that day because we needed to go talk about kindergarten and get him all set up. He asked me if he was going to see all his friends that had 'graduated' previously. And I had to tell him no, not just because of it being a screening day, but because those kids are now in first grade or will be next year when he's in kindergarten.

I just found out that only 1 kid in his class is going onto kindergarten next year. It's his best friend Timmy, which is AWESOME, but I don't know where Timmy will be going. Preschool is only at 1 school (which happens to be our district) so Timmy could be at any one of 3 elementary schools next year, and we still don't know if Coley is going to be in reg-ed (at his current school -our district) or co-taught (at Tucker)...the other school is Glover, which Coley attended during the Summer last year...he doesn't have the need this year.

When we went to go in he was already 'clamming-up'...there was a HSer at the door to escort us to the library, his name was Cole and DH told Coley, then said, 'I wonder what his big name is?' Then Cole said "I wonder if we have the same big name, wouldn't that be pretty cool?' Coley just had his head down and was kinda grunting like, "don't talk to me"... So I said, Coley, tell Cole what your big name is...no response...Cole says "I bet it's Coleman, that's what mine is too" So we all were like "Wow, you never met another Coleman before...and Cole said, neither have I...see that, we have something in common....blah blah blah...no response.

We get there and Cole says good luck and leaves, Coley lifts his head up and freezes at the door. That's when I noticed that he was picking his nails. All the times I had talked to him he didn't seem nervous or anything. I tried not to make a thing out of it, I didn't want it to get worse...so I told him that he needed to be a big boy and talk to the people...

He eventually did the testing (which he did successfully) but refused the hearing exam. :rolleyes: So that's why now we need to see his audiologist before he can be registered in Sept. But since then his stupid tube fell out AND the wax is pooring out of his ears so we need to see the dang ENT first too. Apparently scheduling a visit to see the 2 of them in the same day back to back requires an act of god! UGH!

So later that day we had his 5yo well check, and we explained that Dr V needed to check him out just to tell school that he is healthy enough to go to kindergarten...I didn't realize that I was adding to his anxiety until he told me the next morning that he thought he was going back to kindergarten and not on the van (to preschool). I was like back???? After talking to him more about it we realized that he thought that he was starting kindergarten that day, not being screened. I think it was ALL about his transitional type anxiety and nothing to do with his polluted state, although dealing with that stress was probably more of a challenge for him.

EECK! But he wants to go to parties, he wants to play with kids, wants to DO all these things...and I want him to too...But it's impossible to allow him to do these things without exposing him to crap. I can't even get my own family to entertain having safe foods for him... it's just easier and healthier really for him to not go...but now he's REALLY starting to ask and ask... I guess exclusion was ok when he was 3, maybe even 4....but now it's ridiculous...but how the heck can I allow him to be exposed to that when the following week he'll likely lose his friends due to his behavior as a result?

I know there is only 2 options really, to go or not to go...THIS SUCKS! And now I'm terrified of kindergarten too, cuz he's not doing well off the enzymes...well hopefully the complete will work and not spaz him out!

He is REALLY starting to notice now that things are different for him. Like the van to school, but other stuff too...But when he's polluted he is in such a fog that sometimes we can't make it out of the house for days...he's pretty much oblivious to stuff like that.

Ok, now I'm just rambling...did that answer your question?

RathyKay

04-02-2008, 01:31 PM

EECK! But he wants to go to parties, he wants to play with kids, wants to DO all these things...and I want him to too...But it's impossible to allow him to do these things without exposing him to crap. I can't even get my own family to entertain having safe foods for him... it's just easier and healthier really for him to not go...but now he's REALLY starting to ask and ask... I guess exclusion was ok when he was 3, maybe even 4....but now it's ridiculous...but how the heck can I allow him to be exposed to that when the following week he'll likely lose his friends due to his behavior as a result?
You'll have to work it out. I try and contact parents in advance. When we arrive, I check ingredients and give instructions to the parent and my kid (Samantha, Claire or Tom). "You can eat this, that, or that. Nothing else." And, I send along acceptable food. If it's a party, I do try and bring something a little more special for my child. For a playdate, we bring our typical snacks. Anyway, I've said, "Don't feed my kid!" to many an adult. And tell them "food allergies." They listen better, then.

Kristen (ColeysMom)

04-02-2008, 02:49 PM

I know, I'm just throwing a tantrum!

It's just so friggin frustrating! It shouldn't be this hard! I mean honestly I don't really think I'd want him to have that stuff either way (reaction or not) but what's the big hairy deal if he gets to have garbage every once in a while, ya know!

Well reality IS a big hairy deal...but no one gets that and I just HATE getting the looks and treatment from people...and then poor Coley who is REALLY starting to notice how he's different...waa waa waaa...

I'm just REALLY grumpy, we've all got a head cold and I HATE doing taxes 9almost done though) and all the discouraging news this week!

I think I'll go stick my head in a hole (after I finish the taxes)!

Kristen (ColeysMom)

07-09-2008, 01:43 PM

Well, I figured I should give you guys an update, here seems to be as good of a place as any, and wil bump it up for Shelli to find easily...

For starters Coley's tube replacement surgery is scheduled for 8/1, then hearing assessment for 8/11. Hopefully we will FINALLY get a good idea of his hearing at that point.

Wax is still coming out of his ears in large amounts...I know it correlates to the fructose intake, but other than that, and the dang rash, he's doign well with the levels we are allowing. He's getting green veggies along with a couple fruits per day. Recently we've added melon and blueberries...so far so good. The other 'frustose' items we've added include baby yogurts (more frequently) and small amounts of sugar in things like processed meats (hot dogs, bacon, sausages, salami) and snacks (crackers mostly). We are still keeping the amount to a minimum, and we are making sure that they are organic items too.

One thing that kinda freaked me out though the other day...he picked up one of his kindergarten workbooks for the first time since school ended (4 weeks ago) and wanted to do some with me. His writing was all banged up! This time we were working on numbers and they all prety much looked the same picture an "S" type pattern that continues. So if he was making a 5 it was semi-correct (especially for his age) but the 2 would start at about the bottom half of the "S" and go on, sorta making a backwards "S"...still semi ok for his age and all...but then when he made a 3 it was basically his form of "2" with an added piece to the pattern, so that it looked like a camels back standing vertical...does that make sense? Then I realized what was going on with his 5 & 2's....he 'forgot' how to make a 6 and had trouble even after I reminded him, and it was similar with his 4.

So, it's been a while since being in school, and that likely is part of the problem, but I gotta wonder if it's like with his letters. I've been trying to get him to do more written activities the last few days, but he's been gravitating toward dot-to dots, and mazes. I'll post more once I get some more experiences with him....

He gained 6oz since January, probably more since he was weighed in shorts and T Monday, versus Jeans and a heavy shirt back in January. But a plus is a plus in my book, MUCH better than nothing or a loss!!!!!! And he also grew 3/4"!!!!! Another HUGE feat fdor him. Course it's not the 3 pounds and 2 inches in 6 months we got last time, but hopefully we can do better next time!

Dr Y is testing Coley's vitamin A levels, and is reading the articles I gave him...he suggested that I can bump up his Omega 3-6-9 and COD to 2/day if I want...I think I'm going to start that today. We also stopped giving him his multi-vitamin...for 2 reasons, first that his diet is much more balanced these days, we've noticed that it does tend to mkae him wired, but that it also contains the synthetic A. Dr. Y was ok with that.

He's testing his iron levels, sice we notice such an improvement in him after he has red meat. He's also testing his thyroid. We've had 2 major thyroid developments in the family recently and I think we may be dealing with this to some degree with Coley...it's always tested normal in the past, but I think we may need to actually keep an eye on it to see if it's moving or fluctuating along with his 'other' symptoms. As a reminder DH's thyroid function always came up 'normal' but he was getting more & more symptoms as time went on, finally his Dr prescribed meds JUST because of his symptoms & family history...his symptoms disappeared after...so I have to wonder!

I brought up the whole mito thing, but Dr Y felt that it was a waste to look into since a mito issue would not allow the type of 'progress' that we've seen, so that put my mind at ease.

Lastly he's checking Coley's titers for DTaP...hopefully we can avoid that dang thing too...

ok, I've gotta go...I think I got everything though, I'll check back in a bit...

Ohhh....his rash...still there, it has retreated a bit, but is still present. It does tend to come out more after enzymes...not sure what that could mean. Oh yeah...the complete enzymes upset Coley's stomach so we had to stop those, we've been using the phenol & s.boulardii when he gets 'too much' and it does seem to help get him cleaned out...so I gotta wonder if there isn't something fighting back....we have agreed to see how Coley tolerates stuff without the enzymes for a while, but to use them if his symptoms 'flare'... This is our plan unless something 'comes up'.

And we've got him signed up for swimming lessons, they start in about a week....

Ok, I really need to go now...

KJ

Kristen (ColeysMom)

07-09-2008, 02:27 PM

Oh, one other thing that is a good example of his focus/behavior improvements lately...

We had basically stopped doing his responsibility chart for several weeks because he had lost interest. Rather than add to all of our frustration I just let it go. Although we have continued to keep some things in his routine without a problem, like him dressing himself, making his bed, brushing his teeth, and clearing his plate from the table. I know these things seem minor, but for him to do them on his own is HUGE! We have had to motivate him and we have had to assist, sometimes alot, but once we got it inot the routine we were NOT going to let it slip off...

So lately he's been doing them with just little reminders, the biggest thing is getting dressed BEFORE eating breakfast...that will help SO much come September!

But the other day he said that he wanted to start doing the chart again :D...then I said, yeah cuz I miss having activities with you before bed, his face lit up and he said 'me too'...I'm not sure if that was his motivation or the icing for him, but it was nice to see him excited for a reward...so today we set it up for him.

He made sure to add some helping Daddy type chores, that appears to be his motivation...another good thing! I talked to him about eating his meals like a gentleman and without help...he agreed to add that as one of his responsibilities...which btw he has been better about lately too...not great, but improved...which is why I felt it to be a good time to kick it up a notch...so we shall see.

OH, his flower garden...I gotta get pictures for you guys...he's SO proud of himself, and so happy that DH & I are proud of it too...

So all in all some good things in the last couple months!

We're hoping the swimming will help his confidence and focus, it's an 8 week program that'll bring us right into the start of school, at which point we plan to sign him up for karate, for the same reasons. Plus of course the whole kindergarten program, I'm SO excited for him about...

How have things been with you guys????

RathyKay

07-10-2008, 01:43 AM

Good to hear an update Kristen. We do Roll Call over on Child Neuro. Rather than repeat, my update is the second post: http://brain.hastypastry.net/forums/showthread.php?t=34479.

I'm just about done reading "Evidence of Harm" by Kirby. It covers thimerosal, and I'm feeling a bit sick to my stomach. The politics and cover up and data manipulation. Well, I'm rethinking my "we won't chelate" decision. I think we'll give it a try and see what happens. I don't know if you've looked into any of the vaccines Coley received and if they have thimerosal. I don't know if you want to go there. (I do recommend the book. It's on the "thick" side. My brain doesn't do politics very well. I'm lousy with names and dates.)

The real reason I brought this up.... I thought of Coley at one point in my reading today. Page 344:
Liz Birt now felt that Matthew, who had been sick all winter, was now well enough to begin vitamin B-12 injections and folinic acid supplements. She started the experimental treatment shortly before the DAN! conference, and within weeks saw dramatic changes.

Matthew's behavior improved at home. He was more obedient and attentive. Liz could get him ready and out the door in record time. Before the B-12 injections, each school morning was an ordeal. It took an hour or more to chase Matt around the house, get him to sit down and eat, and coax him into his clothes. Now, she could do it in fifteen minutes.

Matt was much less hyperactive. He could sit quietly for an hour without squirming, crying, or trying to get up and flee. He was sleeping better at night, and his sound sensitivity had diminished. Until recently, any loud noise would send him into fits of tears, and now that happened less frequently.

His ability to go from receptive language to action picked up, too. He was much more responsive to questions, much quicker on the uptake, and more decisive than ever. When Liz asked him what cereal he wanted, for example, Matt would go directly to the cupboard, select the box he wanted, carry it to the table, and sit down to eat. Before the B-12 treatment, this process could last thirty minutes or more, as Matthew pointed to each box, pulled each one out, put some back, and threw some others on the floor.
The crazy mornings and having a hard time deciding what to eat for breakfast reminded me of some of your posts about Coley. Anyway, I don't know if you've tried B-12 injections with Coley? Or oral B-12, but then you have to worry more about the additives for Coley. Just wanted to throw that out there.

To be honest, I don't like hearing about the increase in ear wax with the additions to his diet, but that's your decision. Hopefully, the number writing is just the four weeks out of school, and not related to his diet.

Kristen (ColeysMom)

07-10-2008, 11:53 AM

I know Kathy! His behavior along with the wax and the rash...it's been my guage through all this...but the Docs keep separating them...I'm trying to have faith...

The thing that keeps me from flipping out, is that his 'processing' seems ok. His health is ok too...so there's a rash, so there's some wax (as long as he can hear) what's the biggy????

I know something is up, and when's it gonna blow...but if he is developmentally doing ok with these few more things in his diet...

I need more time with him on the writing...if I find that there is a larger problem, you can bet I'll be pulling back on things!

Ugh the B-12...alright, my first question, what are natural sources of b-12? gotta be something on our no-list, right?...

oh look:
http://ods.od.nih.gov/factsheets/vitaminb12.asp#h2

Well, now I'm not worried...aside from the cereals & fast food stuff, these are some of Coley's favorite things!

I just checked his labs from 10/07, his B12 is 1129 (ref range is >250) so I think we're good, ya?

But,

Folic Acid is >20 (ref range 3.1-17.4)
Plasma Carbon Dioxide is 21.3 (ref range 23-31.9)
Transaminase-SGOT is 44 (ref range 10-40)

Everything else is within range.

I just got this print out on Monday, Dr Y was having problems with his reports...anyway, what are these things? He didn't raise them, only the D which was 23 with a desired >32...so he asked us to add that. And with all the posts about the 'right' D, I've been making extra efforts to get him in the sun, without block!

Ok, I'm gonna go read your update now...

Kristen (ColeysMom)

02-10-2009, 11:08 AM

Girls I've been all over the map lately! And wanting to pull this topic up fro a while...

We got Coley's written report on his ADHD diag. UGH! I have it scanned, Peg's would you mind giving it a read? We are in the process of setting up an meeting to revise his IEP, so would LOVE your thoughts...and anyone else who would like to chime in too!

ok, I have a lot of thoughts, but need to make this short right now, so gotta cut to the chase.

Remember that we stopped Coley's supplements over the summer, I think I mentioned that above somewhere. Also on advice from his GI we slowed down on the probiotics & enzymes to test his processing ability.

Things have definatley improved in that regard, but it does seem as though the supplements (and I'm thinking D more than anything) is doing a lot for his mental 'balance'...magnesium for his emotional balance.

The parenting techniques have been helping, but there's a big update there too...I'll get to that in the class thread...

Ok, so I've been reading, and reading, and googling and googling...and trying to find a good ADHD support group...UGH! the meds...:confused:

Right now we are gearing up for 1st grade! EEEK!

So I want to get him back on track with supplements & all to get a good indication of where we are before getting to the scary place of considering meds, ya know!

Ok, so we did a week on the s.boulardii, and a week on phenol enzymes...definately saw die off behavior...now I'm giving him a week off. We've started back up on the Omega's and his magnesium/zinc/D supplement. I'll pick up the s.boulardii again after we get into a non-protesting routine again.

I've already seen some improvements with his mood swings...the mag really helps there! He's been calmer, that stuff seems to work so FAST.

My question is about the D. Without having to go through all Ted's posts...can you guys tell me more about D3? Is D, D? Or is it like the Omega's in that you have to get the right form?

D3 is the one I want right? But when I go to the store, it only says D...Do I have to special order D3 or something?????

Any ideas where I can find a good group of ADHD moms? The CHADD group costs to join, WTF! And it doesn't seem as though they really have a good group to chat with anyway. I don't want someplace that just talks about getting meds right either...I want to fight this from every angle, ay know!

What else should I be looking at? We see his GI again the first week of March...I think I'm going to have him check vit/min levels...what do you think we should check other than D, magnesium, zinc? I think I want his thyroid checked too...

Any other thoughts?

OH, EEK...lot's of spacing out. We see his ped a week from Monday...I think I'm going to push for a neuro f/u.

Ok, gotta fly...Little Miss is getting impatient! I'll be back!

Thanks for your help!
KJ

peglem

02-10-2009, 11:55 AM

Yeah, I'll take a look at the report.

I stopped Allie's vitamin supplement when we ran out- new order should be arriving today.

Back at the end of November, we had increased Allie's lamictal and she did great until about 2 weeks ago- she started up bigtime with OCD and bad meltdowns...I think it has to do with the vitamins, but she seems to be in pain so we're playing the "what's wrong with Allie?" guesing game. ( could be menstrual stuff-she's yet to start her period) She had some whopping gas emissions for a few days...seemed to feel a lot better with Ginger root. I added some inositol the last few days and she did really well this morning...w/o ibuprofen, which she's been getting probably too much. Anyway, I'll be glad to get her back on the vitamins and see if things pick up a little then. I give the boulardii every 2 or 3 days before bedtime. Since she's on Nystantin and I've yet to get a clear answer on whether it kills the boulardii or not, I try to give it several hours after her last Nyst. dosage and I figure overnight gives it time to colonize.
Anyway, I have to get going- but, oh, yeah, for a message board, you might try:
http://www.latitudes.org/forums/index.php?showforum=13

lots of complementary/alternative medicine believers there.

Kristen (ColeysMom)

02-10-2009, 12:03 PM

Thanks Peg, I'll e-mail the report & check that link!

S.boulardii is non-colonizing. It goes in, crowds stuff out & moves on. You gotta keep giving it if you think there's an ongoing issue. The ones in yogurt are colonizing, so maybe add that to the regimine while on nystatin???? I know she's picky, but there are lots of drinks, frozen pops, pudding type, etc....before having to resort to another capusule to hide or take???

ok, gotta fly too...

peglem

02-10-2009, 12:08 PM

Actually, the easiest way to get something into Allie is pill or tablet. She's great a taking medicine/swallowing pills. She doesn't always eat things, whether its something she likes or not and past history of hiding things- she always knows and avoids the food after that.

Kristen (ColeysMom)

02-10-2009, 12:54 PM

That's awesome! I've been having a heck of a time getting Coley back on his supplements!

peglem

02-10-2009, 02:07 PM

Allie didn't start swallowing pills until she was about 10 years old. After years of feeling lousy-she wanted to take medicine, despite her natural aversion, because she was assured the doctor wanted to help her feel better with the medicine. Once she was able to take the liquid medicine from a syringe, I came up with the idea (she cannot chase a pill down by drinking from a cup-it falls out of her mouth) of chasing the pills down with water in a syringe. She got the hang of it pretty quicklyand now, well you should see the size of some of the pills she swallows with no difficulty!

I got your email and read the report. I'll need some processing time to respond, because as you say, its very long! My first impression though, is that Coley would greatly benefit from RDI, re the perpspective borrowing, self regulation, social/emotional development. But, also, I'd start with a veeg/sleep study, during which I'd want to put him through situations that stress him a bit. Because, if he is having absence seizures, well, you cannot get him to remember information/instructions that his brain was not present for. And I think you need that information, to consider at least, before you can make a viable treatment plan.

Kristen (ColeysMom)

02-10-2009, 02:34 PM

peglem

02-10-2009, 03:17 PM

I agree!

After reading the report I kinda freaked...clearly his PDD symptoms have improved, but they are not at all resolved. :( So I decided that I need to redevote myself to the RDI techniques. As soon as I finish the ADHD book, and look into some things, I'm going to start reading the RDI book that has been collecting dust since...god how long ago??? :eek:

We were making good progress when Audrey was very little, but I just haven't focused on it since...bad bad mommy!

How's that been going for you guys?
Our meeting last week went really well. We're finally getting to what to do, instead of just education on what RDI is...
Our supernanny is coming to the meetings as well and our consultant suggested the 2 of them get together for lunch sometime to further discuss, and she provided some materials for her (with the proviso that she not share them with others, but only use them to help Allie)

I'm trying to find some stuff on amino acids that is credible enough to show his GI too. Perhaps it doesn't exist???? If this is a credible avenue, I'd like to look into that too.
Kathy is the obvious person to go to on that. I wanted to mention earlier, when you were talking about whether to test for vitamin/mineral levels- Do you have somebody who would know what to do with the results? I don't think its as easy as just supplementing deficiencies (and not sure if a blood level deficiency really indicates a body deficiency) because these things interract with one another. For instance, we were supplementing with B6 when Allie was very young (and I was less wise). She developed problems with muscle aches/charlie horses. With a little more research, I found out that B6 depletes magnesium and the problem was corrected by adding a magnesium supplement. Honestly, how to maintain the balance of these things is just too confusing for me. So, I opted for a multi, high in B's (AED's tend to deplete these) figuring that it was more likely to offer the neccessary combos. Allie was tested for A, D, & K (fat soluables) and is okay in all 3.

About the spacing out...I'm pretty nervous about this...meds & all...I'm also torn as to whether we go to a new neuro or the old one. His old neuro is at Children's (where the metabolic Dr kinda cornered us into giving him fructose to 'prove' his intolerance...he ended up having a hypothermic/hypoglycemic attack which gave us a HUGE set back in skills - which then led us to MGH for treatment, and to top it off Children's is the hosp that took full advantage of us after the inept hopsital took the x-rays of Audrey's fracture) I SO don't want to go back there, but I do like the idea of seeing someone that has some history with Coley...but also like the idea that a neuro at MGH would be able to work with his GI & metabolic doc...A decision to mull over with his ped I guess!

...lots to work on still...ugh! My head is spinning, course flirting with a cold doesn't help!

If it was up to me, I'd go with a new one at MGH who can work with the other doctors and say fooey on children's unless there's some marvelous service or physician there that you just gotta see. I'd get a copy of Coley's records and highlight any history you'd especially want the new neuro to consider.

RathyKay

02-12-2009, 01:19 PM

Yes, I've been AWOL. I've been doing important stuff like playing games on other websites, trying to keep up with my kids.:p
I'm trying to find some stuff on amino acids that is credible enough to show his GI too. Perhaps it doesn't exist???? If this is a credible avenue, I'd like to look into that too.
Kathy is the obvious person to go to on that. I wanted to mention earlier, when you were talking about whether to test for vitamin/mineral levels- Do you have somebody who would know what to do with the results? I don't think its as easy as just supplementing deficiencies (and not sure if a blood level deficiency really indicates a body deficiency) because these things interract with one another.
Sorry, my amino acid knowledge is very limited. As far as "credible enough to show his GI," I think a lot of this stuff isn't getting that kind of testing. There's not the money in it like in a drug. And I've read too much over on Gluten Sensitivity that I really don't... respect? GIs.

Kristen, did you ever look into a DAN! doctor? (Can you afford it?:o) I just remember all of the test results we got back from our initial testing. He had this "lovely" diagram with the Krebs cycle and a whole lot of other cycles that are related to problems with autistic kids. There was the part related to B12 - "and a low level (or high level?) here means that his body is unable to convert this form into that form" "and this value means that he's oxidizing at a high rate and needs more vitamin C." Anyway, just wanted to echo the part about needing somebody to interpret some of these results.

Peg - that was interesting on the B6 / Mag with Allie. I knew there was some kind of interaction, but never bothered to look it up. We started Tom on a combo pill from the very beginning (the chewable tablet from Kirkman Labs, now he's on the P-5-P with Magnesium Glycinate horse pill from Kirkman as P-5-P is the more readily available form of B6), so we never saw problems. Samantha, in the past six months or so has been having "my stomach hurts" problems (cramps?) every few weeks. I was beginning to think menstruation - she hasn't started yet. The timing was starting to coincide with my cycle and I've just started marking the calendar. Anyway, I read online that B6 / Mag can help relieve menstrual pain, so we started her up again (multi-vitamin, and the horse pill Tom is taking). She "skipped" this cycle of discomfort. Too soon to tell if it's problem solved, but so far, so good. Anyway, are you still giving it to Allie? Might help if she is having some pre-menstrual cyclical cramping.

Kristen, the D3 sounds right. I think you want it oil-based, too, as it is absorbed better. http://www.vitamindcouncil.org/treatment.shtml Hmmm... is the term vitamin D cholecalciferol the magic word?