Question about yeast/candida

[peglem]

My understanding is that candida is a normal part of the intestinal flora and that yeast overgrowth can cause a lot of problems. But, is it possible to have yeast undergrowth? I mean, in treating the yeast, is it possible to kill too much of it, thereby producing an imbalance of microbes in the intestines?

[milivica]

I would be you almost anything it is! I never thought of that, but yes it must be.

I recall reading (we are a 'yeasty' family) that you need some yeast to...I forget what, to 'eat' other intestinal things...for balance. You need a balanced amount of yeast.

Holy cow, I really think you're onto something Peg, for your daughter I mean.

[peglem]

I would be you almost anything it is! I never thought of that, but yes it must be.

I recall reading (we are a 'yeasty' family) that you need some yeast to...I forget what, to 'eat' other intestinal things...for balance. You need a balanced amount of yeast.

Holy cow, I really think you're onto something Peg, for your daughter I mean.

Wish I was as confident of that as you are! Its just that she hasn't had antibiotics in @ a month, but I've still been giving the diflucan once a week...she's been in a lot of pain the last week or so, maybe tummy pain, but covers her eyes to shut out light a lot too. Yesterday some of the OCD stuff started back and she didn't sleep last night til @ 3:30 AM. I don't know, it might be the thing coming back that the antibiotics help with. I'm at a loss- grasping at straws really. All the yeast sites just talk about overgrowth, so I don't even know if its possible to have not enough. In anycase, I don't think they know how to measure it or even how much there's supposed to be. Or it could be that her immune system IS functioning better like the immunologist says and she's just getting rid of the bugs that have been hanging out unopposed.

[milivica]

Girl, I've been looking and looking...cannot find anything about yeast UNDERgrowth.

Saw a few things about what the normal intestinal flora should be, but didn't give me any numbers or exactly how to test this kind of thing.

I really really think you are absolutely onto something. Your health is about balance in the GI tract right? And it's a balancing game that's constantly out of balance with antibiotics. See if you can find something on what the normal ranges are for all the gut creepies we have...what tests need to be done, how invasive, what are the norms. From all you've said about her, I think getting a read on her gut is a very very good idea. The yeast, the flora (the fauna).

You ARE onto something.
Mili

[RathyKay]

I went to our DAN! doctor yesterday, and I thought about asking him this. However, we ran out of time for what we needed to discuss (and this is MY money we're spendng), so I never asked. We're definitely on the overgrowth side of things.

A couple of things... it looks like we'll try a round or two of chelation and see how the results go. He uses 4 different anti-fungal treatments that we'll rotate through. He said, "Yeast are very resistant, so I like to rotate my treatments." Also, to make "authentic" San Francisco sourdough bread, you don't add yeast. You catch it from the air. (Near San Francisco, of course. I'm not sure if we have the "right" yeast where we are.) Yeast is everywhere. One of my allergy cookbooks says if you are avoiding yeast and you need orange juice, cut up a fresh orange, squeeze it, and use it right away. Otherwise, you're adding yeast. So I guess theoretically, it's possible to not have enough yeast, I just doubt it.

I guess I would tend to believe she needs some major acidopholus all the time to counter all the bad bacteria (and good) the antibiotics are killing. I'm not sure whatall you have tried. I know we have some Saccharomyces boulardii whichis 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.Actually, I thought someone said it grows in your gut and crowds out the "bad guys" as long as you're taking the capsules. When you stop taking the capsules, they (the S. Boulardii) go away.

Anyway... just my two cents, with no real data behind it.

[RathyKay]

Okay, this might not be exactly your case, but this is what it reminded me of... (This is from "Children With Starving Brains" by McCandless, p. 107.)
Sometime extremely large amounts of probiotics are required to crowd out the yeasts and bacteria, especially Clostridia. Clostridia are anaerobic bacteria commonly present in small amounts in the gut, but capable of creating a dominant colonization. Unfortunately, Clostridia overgrowth can be very resistant to treatment and very destructive to the gut wall. Some children have been noted to have an amazing improvement in their cognition and behavior during a treatment course of the antibiotic Vancomycin, which kills Clostridia. However, because it is spore-forming, the child's impairment almost always returns after the course of antibitoics is completed. When a child has severe Clostridia, even more strict adherence to diet and probiotics is in order. I have learned that Clostridia must be treated before or concomitantly with anti-fungal treament when both are present, as it has been noted that when one is treated, the other can sometimes flourish with less competition for the food available. I have recently started the use of anti-bacterials and anti-fungals concomitantly for several months at a time along with high potency probiotics such as Klaire's Ther-Biotics Complete, a frequent combination being Diflucan with Vancomycin or Flagyl.

Flagyl (Metronidazole) is a powerful antibiotic that is effective against bacteria such as Clostridia and protozoa or other common parasites. This medicine is very bitter, although a compounded form tastes somewhat better. Heavy use of probiotics upon cessation of the drug is recommended as Flagyl will destroy "good bugs" too. In extremely resistant cases of Clostridia, the antibiotic Vancomycin HCl just mentioned is very effective, but also must be followed by adequate probiotics to replace the good flora that this medicine destroys.

Anything that enhances the immune system helps the child combat yeast overgrowth. Anytime a child starts erratic and unusual behaviors (and there is no obvious cause such as starting a new nutrient or a dietary infraction), yeast or other pathogenic overgrowth should always be suspected, tested for, and adequately treated.

Anytime a child acts "drunk" you can bet they have the "auto-brewery syndrome" - alcoholic intoxication due to the overgrowth of Candida albicans in the G.I. tract.

[kyles7]

Wish I was as confident of that as you are! Its just that she hasn't had antibiotics in @ a month, but I've still been giving the diflucan once a week...she's been in a lot of pain the last week or so, maybe tummy pain, but covers her eyes to shut out light a lot too. Yesterday some of the OCD stuff started back and she didn't sleep last night til @ 3:30 AM. I don't know, it might be the thing coming back that the antibiotics help with. I'm at a loss- grasping at straws really. All the yeast sites just talk about overgrowth, so I don't even know if its possible to have not enough. In anycase, I don't think they know how to measure it or even how much there's supposed to be. Or it could be that her immune system IS functioning better like the immunologist says and she's just getting rid of the bugs that have been hanging out unopposed.
Some people take a different approach to achieving a healthy balance of intestinal flora by taking probiotics. What's better than pill probiotics are distributed live culture products like Kefir (a drinkable yogurt-like product). Lifeway brand Kefir has become very popular and has ten different active cultures rather than just one or two as in yogurt.

Drinking some Kefir a couple times per day will help to replenish healthy bacteria where antibiotics are in use, and also help to keep Candida counts in balance. Recent studies have linked mental health and possibly even rate of aging in animals to healthy gut flora.

And where candida is overproliferating in the intestines, Nystatin is much more appropriate than Diflucan, and is also almost entirely non-toxic, can be used repeatedly in high dosages, and only tiny amounts actually get absorbed through the digestive tract into the circulation.

[peglem]

Kathy,

Clostridium sounds plausible. Some of Allie's physicians think she may just be a carrier of strep, but what I've noticed is that she greatly improves (especially OCD and rages) when on antibiotics, particularly the broad spectrum ones, as opposed to amoxicillan or augmentum. The probiotics I give her have 10 different strains of gut buddies. She was so much better today- I skipped the weekly diflucan dose due yeasterday (oooh, that was a typo, but I'm keeping it that way!) Zero, count 'em' ZERO meltdowns today and no noticeable OCD. She even went swimming with me twice today- her favorite thing, but hasn't been interested for a few weeks. So, until things take a turn for the worse, I'm keeping it the same. If it ain't broke...

Kyles7, Allie will not drink those yogurty drinks, although she will eat Yoplait, strawberry cheesecake flavor, but I don't think its particularly high in probiotics. The diflucan was prescribed originally for vaginal yeast. I didn't want to use anything vaginally injected because I think its a bad idea for a nonverbal autistic girl on the verge of puberty to think its ever okay for somebody to mess with her privates. I think, too, the reasoning may have been that something with a weekly, instead of daily dosing may be easier on her. She did take Nystatin once, but she got a rash...not sure if it was the cause or not.

Thanks for the input everyone! Hope I don't need your help again, but nice to know its here if I do!

[callyflower]

I suspect she doesn't have a yeast "undergrowth" but rather a bacterial overgrowth caused by a combo of the antibiotics and Diflucan. Diflucan only attacks fungus, not bacteria and you can't affect the level of one without effecting all of them.

Two things I would recommend would be high (as in 5-6 caps a day) of s boulardii (you can look it up) and a good probiotic such as Custom Probiotics 1 (2-3 a day). This combo should take care of whatever is wrong after a couple of weeks to a month. Ideally, with all her antibiotic use, she should have been on a GOOD probiotic for months now, if not years.

If you'd like to do testing, a CDSA would be the place to start.

Good luck,

Cally

[peglem]

Thanks guys! I'm excited, because this looks like a good possibility. I found out that diflucan kills s-boulardii. So, my plan of action here is s-boulardii and a good probiotic...will keep you posted. It would be so nice if Allie wasn't sick all the time and I could concentrate on personal growth instead. Pretty hard to teach/reach a child who is sick all the time, especially when she is ragey and performing compulsive rituals.

[TracyLAR]

I've had my son on S. boulardii and Therbiotic complete for 3 years now - he has regular, normal looking and smelling poops. I haven't tested him for anything in over a year, but even when I did many more interventions, his behaviors didn't change much. We used Ceftin to treat a bacterial overgrowth way back at the beginning of our biomedical interventions. While on that, my son exhibited lining up behaviors for the first and only time. I was told he probably had yeast overgrowth because of the antiobiotic. Diflucan and Flagyl were recommended. When we tried Diflucan once it caused vomiting and lethargy so I didn't continue it - I just couldn't see having a three year old on Diflucan daily for a month!

Anyway, long story short - we now do nothing but digestive enzymes with each meal, CLO, probiotics, and multivitamin/mineral and calcium. My son is still clearly autistic, but making progress in school and happy as a duck.

FWIW

Tracy
Drayton's mom

[peglem]

I've had my son on S. boulardii and Therbiotic complete for 3 years now - he has regular, normal looking and smelling poops. I haven't tested him for anything in over a year, but even when I did many more interventions, his behaviors didn't change much. We used Ceftin to treat a bacterial overgrowth way back at the beginning of our biomedical interventions. While on that, my son exhibited lining up behaviors for the first and only time. I was told he probably had yeast overgrowth because of the antiobiotic. Diflucan and Flagyl were recommended. When we tried Diflucan once it caused vomiting and lethargy so I didn't continue it - I just couldn't see having a three year old on Diflucan daily for a month!

Anyway, long story short - we now do nothing but digestive enzymes with each meal, CLO, probiotics, and multivitamin/mineral and calcium. My son is still clearly autistic, but making progress in school and happy as a duck.

FWIW

Tracy
Drayton's mom

Allie was on the weekly diflucan, but lethargy has NEVER been a problem- lack of it maybe!

I'm going to have to order some boulardii- Sprouts never heard of it! I don't know how happy a duck is (the one my older daughter had was constantly harrassed by Allie) but probably happier than my Allie! Although, when she is happy, it is the most intense happy I've ever seen.

[TracyLAR]

We use the Thorne Saccro-B - I order it from the Family Pharmacy of Sarasota online - easy and great service.

https://ssl.familypharmacy.net/shopping.htm

Good luck!

Tracy

PS I don't know how happy a duck is either! It's just an expression I've always used!



Allie was on the weekly diflucan, but lethargy has NEVER been a problem- lack of it maybe!

I'm going to have to order some boulardii- Sprouts never heard of it! I don't know how happy a duck is (the one my older daughter had was constantly harrassed by Allie) but probably happier than my Allie! Although, when she is happy, it is the most intense happy I've ever seen.

[RathyKay]

I thought of you...
http://brain.hastypastry.net/forums/showthread.php?t=16265
No, I don't understand it all; I just thought of you.;) Does pyrroluria fit at all? B6 deficiency? How is the bacterial overgrowth combat going?

[peglem]

Gosh, thanks for thinking of me Kathy!

I just don't know if pyrroluria or B6 deficiency fits...

I got the boulardii last night from Kirkmans- starting it today.

Rethinking Allie's history re: photsensitivity-

It began @ 6weeks after her tonsillectomy last summer- she had not been on any antibiotics since the tonsillectomy, because we assumed that took care of the strep (still confused about that strep issue)

She got horrible vaginal yeast, (probably other places too-previous to tonsillectomy she was almost constantly on antibiotics) which was treated with a dose of flucanasole. After 2 weeks- no improvement, so was given a 6 months supply. During this time she was frequently on antibiotics for strep. But, w/ the flucanasole- the photsensitivity seemed to ease. Once the ENT pronounced her a carrier, her PCP and I started thinking that maybe the strep has been a red herring... I dunno, cuz there were times that she did well that correlated with a neg. strep test. Anyway, she's not had antibiotics for about 2 months- but I continued the flucanasole. In the last month- mega photosensitivity, but instead of headaches she's having these things that look like seizures to me. She hasn't had flucanasole for the last 2 weeks. The "streppy behaviors" came back on Thursday morning. I call them that because they were what always prompted me to get her tested for strep. It begins with hyperhyperhyperactivity- running maniacly through the house, oblivious of anything in the way. Then it progresses to ossessive compulsive stuff, all sprinkled with rages. But, what I'm thinking is that she seems to have had the perfect conditions for clostridia overgrowth, so, I'm going to hold off on the doctor until I give the boulardii/probiotics a chance, unless there are obvious signs of an infection, though, I'm not even sure her immune system is capable of producing inflamation these days!

RE: the article and hemoglobin induced anemia- doesn't anemia usually make people sluggish and weak feeling? Well, its food for thought and I may study on this a little more. I've just kinda gotten sick of research, research, research...with no answers for my child.

[RathyKay]

More biofilm stuff:
http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=367
This was the quote that clicked a little better for me (bold is mine):Much of the time was spent talking about biofilms. Apparently the bacteria and fungi in this world do not all float about as individuals. Some of these beasties get together and form a nice comfy home with a substance that is not penetrated by our immune cells or by our drugs. From what I understood, at times the communities would release their bacteria or fungi into the surroundings. This is what causes such things as recurrent otitis media. The antibiotics would take care of the free floating organisms but would not get rid of the biofilm.
Or repeated strep? Hal (in my previous post) mentioned streptococcus being one that forms biofilms. I forgot to mention, Hal is pretty good about answering questions, if you want to ask. He's anti-starch, in addition to GF. And, you can post a question to Anne in the above link, here on our GS/CD forum. It's the same Anne. I know you're researched out, but if I wait until you're ready to dive back in, I will have completely forgotten about it.;)

[peglem]

Thanks more, Kathy- I will get to it, just seems like everytime I get started on a new path (researchwise), some crisis comes up that takes precidence. Allie has blocked eustacean tubes (no infection though) and has been taking a steroid nasal spray- the second day on it, she came home from school with bruising in the inner corners of her eyes (ethmoid sinus area). I thought she had just bruised herself by smashing her knee into her face, (not so uncommon as you'd think) But the bruising is getting worse and a bit of swelling too. The pharmacist says he doesn't think its the spray...I'm going to take her to urgent care tomorrow- hope they can help. Just hate to do that because they don't know my kid and are likely to pass it off as autism related stuff, but I can probably at least get an xray. Now I'm wondering if she's been kneeing herself in the face because something hurts up there (before the bruise). Will I ever get this child figured out?

[Isabelle]

when you do let me know.

danny does the kneeing too, he hits his face so fast, that we can't see it coming is so totally unexpected. now since a neighbour called the police when he was having a wild SIB with loud screams, fast breathing, eyes wide swiftly moving from side to side, we have been able to stop him and prevent it by saying very calmly "stop,please" "deep breaths" we do the motions, and "count to 10" and he is responding to these calming actions while before they looked like that worsen his SIBs.

We still do not know what brings these SIBs, my dd saw one and thought that they really looked like hallucinations or panic attacks with his fast breathing and wild eyes. So reading "panic/anxiety attacks" at the Mayo Clinic.com, besides many other factors mentioned, was "drug withdrawal" and I believe that could/might explain it in his case. He is already a year off drugs.

[peglem]

How often does Danny have SIBS? Took Allie to Urgent care this AM. The doctor said the bruising (which was worse this morning w/ swelling in the temples) is caused by banging her forehead and the blood ran under her skin and pooled around the eye sockets. Maybe... but wouldn't her forehead have been bruised 1st? My oldest daughter got the impression he thought we were beating her (I didn't, but she's better at reading people).

Anywho, Mostly Allie's SIBS seem like she's got pain somewhere, which evokes fear and anxiety.

[RathyKay]

Maybe... but wouldn't her forehead have been bruised 1st?
I don't think so. There's more room around the eyes for the blood to pool. My understanding is that you can get hit several places on the head and it all shows up around the eyes. My broken nose (car wreck) gave me a *lovely* black eye.

[peglem]

Okay, but this child has been hitting pretty hard for @ ten years and this has never happened before. He saw the scar/callouse on her forehead and made a leap of faith, I think. Anyway she does seem to be feeling better now-crossing my fingers. At least I'll be able to tell the school something!

[Isabelle]

How often does Danny have SIBS? Took Allie to Urgent care this AM. The doctor said the bruising (which was worse this morning w/ swelling in the temples) is caused by banging her forehead and the blood ran under her skin and pooled around the eye sockets. Maybe... but wouldn't her forehead have been bruised 1st? My oldest daughter got the impression he thought we were beating her (I didn't, but she's better at reading people).

Anywho, Mostly Allie's SIBS seem like she's got pain somewhere, which evokes fear and anxiety.


I say take videos, because they are going to think that you are beating her. I have videos of his worst "attacks".


Looking at my calendar for the last 6 months 10x to 15x a month most of them mild hits (right hand heel hits the right side of his head covered by his helmet, exactly as Silentmeow in her video), lasting perhaps 20 to 30 seconds, the hits are slow, deliberated, eyes fixed on you if you happened to be there.

However, there are some days, I guess because of the moon ?? I run out of explanations really, he starts with minor ones 3x to 6x a day (4 to 10 light hits mostly to his helmet) gradually increasing in strength and quantity before exploding on a big one, wild hits, piercing screaming, swift kneeing, bites to his right hand, even breaking-walls-head bangs.

At the beginning when he came home we had twice a week several times a day wild ones head bangs, hits, kneeing,bites during the days, screaming so loud we were sure the neighbours would call the police despite explaining to them, they were worse in the middle of the night. The sound was horrible and blood was pouring all over. We called 4x 911 to take him to the hospital thinking he would need stitches, he was x-rayed to see if he broke his nose but no he just had a nose bleed or mouth bleed. Head had abrasions red skin despite the strength of the blows. His attacks were so violent we were scared out of our lights because if we approach him he could grab us and head butt us or punch us or karate hit us.

As time went on we noticed that we could intervene, once during a wild one with head bangs, my youngest boy threw a comforter over his head, surprise! he whimpered down and sat down to count...we were elated! From then we intervene. It has been 3 years at home and 1 drug-free. We really start to see the light at the end of the tunnel.

I believe, in his case, that those "panic/anxiety" attacks with HB/SIBs are drug-induced, worse on withdrawal, also include in the mix right down abuse. He never hurt himself of others until he was given all sort of drugs in the group home and his occasional HB/SIBs became chronic after 2 years on Risperdal.

I don't know about Allie, pain? possible! She has been on Risperdal, could it increased her natural pain? I don't know. But my boy was a happy boy, non-aggressive until given all sort of drugs.

I don't know what to tell you. I wish I could...

[Kristen (ColeysMom)]

Just wanted to toss one thought into the mix here.

Coley had a terrible time battling off thrush (even with an Rx)...turns out that he has a deficiency that prevents him from metabolizing sugars properly. As a result the bacterias/fungus thrived in his gut.

Once we removed it from his diet, the thrush left and hasn't returned...but his behavior, focus and awareness improved greatly.

[peglem]

Well. been doing the boulardii/probiotic combo for @ 2 weeks. Am seeing almost no OC stuff. Rages are fewer, but more intense when they do come. More attempts at communication:) :) :) But, also she was started on lamictal about 10 days ago. I'll post about that on the other thread.

[Lara]

Hey, peglem.

Just catching up here. That's good news!!! Interesting too. Hard to know some things when more than one change has been made at the same time, but it's not going to harm her and after all the infections and antibiotics, it can surely only help. Hope it lasts.

I'll go back and read about the Lamictal.

edited to add: OK, I just realized I had already caught up with that thread. :)

[peglem]

Well, day 23 of the lamictal, she's been at 50mg/day for 8 days. We are not seeing anymore of the seizure episodes (yea!). But, sleep schedule is BIZARRE! I don't know if its from the lamictal or not. We had decided to try the boulardii and probiotics for her "streppy behaviors" and that seemed to work for awhile...but 11 days ago (I'm keeping a journal now) compulsive behaviors and extreme hyperactivity returned, and not eating very well. I don't want it to be strep anymore...decided to just wait it out, not wanting more antibiotics. Let me tell you, these behaviors combined with lack of sleep are killing me. I have to put on my "make pretend I'm supermom" persona just to deal with her. So, today- my oldest daughter tested positive for strep. (insert the foulest language you can manage!) So, I'm pretty positive Allie has it too. Tomorrow is her last day of summer school and I don't want to foul that up for her, so I guess, I'll try to get her in in the afternoon. Also, she seems really hesitant to use her hands, like it hurts- to feed herself or push buttons on media devices. (forgive my sick sense of humor, but this is kinda funny considering one of her great obsessions is playing "Little Miss Sunshine" over and over again). I've been helping her eat and she often gets neck jerks when she opens her mouth for more food.

Friday, we see a pediatric rheumatologist at the local children's hospital. Hope we don't get blown off! I feel like everything is such a mess with Allie, healthwise. Wish there was some "jack of all trades" type specialist we could see that could get it all figured out for us. I'm so tired, tired, tired of dealing with all this. Tired of wondering if the next doctor will dismiss us or find some answers. But, mostly I'm just tired.

[Lara]

All the very best for your Friday appointment.

Peglem,
why not use a Paediatrician who is also easily accessible. Close to home. They could gather all the info. in from other speciality areas and keep it all together. Not sure how it works there, but here it is probably a Consultant Paediatric Physician.

[peglem]

Allie does have a close to home pediatrician who, I think, is wonderful. He is the one who gets us referrals and has done research on PANDAS. Its just that all the info coming back seems so confusing and conflicting and Allie is so hard to examine. He has offered to do prophilactic antibiotics, if we want to try that, but that was just after the ENT had pronounced her a carrier and it would consist of a monthly injection (or was it every 2 weeks?) With her yeast problems, I was willing to hope for carrier status. We may end up there yet...tough decision. But, you're the one with the goods on PANDAS...is there a lab test for it, or is it a clinical dx? My understanding is that while they did do a clinical trial for a marker (D8/something-don't feel like looking it up right now), the test was not conclusive enough or something and the test is not comercially available. We have a chicken/egg thing going on with the joint pain- is it from gnawing on her hands or does she gnaw because of the pain. I suspect the latter because, its worse when she's streppy- the not wanting to use her hands/fingers & the gnawing. We'll see how it goes Friday- I'm praying the doc will listen to me and I say the right things to get him to try. I've had some problems with dr.s at this hospital acting subtly like they don't think Allie is worth the trouble because she's so low functioning...This guy, though, has only been there for about 6 months, so maybe he's different.

[RathyKay]

I wondered how things were going. Sorry to hear that strep may be back. Ugh. I hope the rheumy is helpful. I hope he at least treats both of you with respect, and not the "why bother" attitude. (((Hugs))) and wishes for a good night's sleep for both of you.

[peglem]

Thanks Kathy.
Allie came home from school yesterday and went straight to bed. She slept until about 1AM...I got up and got her some food, let dad deal and went back to bed. Back up around 4 AM (me, she stayed up)- let dad go to bed. More food...Aound 5:15 she started the seizury stuff that we haven't seen for about a week. She had around 12 (probably more). These upset her and she was fighting really hard in between. Gave her lamictal about 5:30 and she stopped about 5:45. Went to sleep at 6:00. I called to cancel the bus. She's not going to school today. How can I wake her up now and make her get ready for school? I got some sleep (sorta) and my exhaustion has given way to greater concern for her. We'll get her some antibiotics today.

[RathyKay]

The seizury stuff sounds a little excessive. Do you have Diastat to give her to stop it? It's for stopping seizures in progress (or seizure clusters), not for longterm use. Did your neuro prescribe it for you? Or did you not know to ask? (As an added bonus, Tom usually crashes afterwards.)

I'm glad you got some sleep. We take turns, although I do most of the weeknight stuff. In exchange, I get to sleep late on the weekends, and Mr. Kay gets up with the kids. Tom sleeps much better than you're describing, so I shouldn't really complain. But, he never sleeps late, so when he does, I hate to wake him up.

Keep up the probiotics and S Boullardi, and hopefully the antibiotics will only do good things.

[peglem]

Well, Allie had a positive strep test and is on zithromax- already we're seeing zithromagic. Yesterday, only a few hours after her 1st dose, we took her to the dollar store( the only public place we;ve been able to get her to go into for a couple years now). Usually she zips around (frantically running) the front 1/2 of the store-can't loose sight of the entrance, and goes kinda crazy with anxiety while quickly snatching a few desired items on the way by. Yesterday, she walked, carefully studied a variety of merchandise before making her selections, actually strolled to the back part of the store and waited while the purchase was complete. Her older sister(dollar store is at least a 2 chaperone operation) and I had to pick our jaws up off the floor on the way out, it was that amazing!!! A few hours prior to that she was attacking me in the dr.'s waiting room, which although it does get us called back more quickly, is pretty horrible to deal with. So, that's exciting and puzzling. If she's having strep problems, why don't the other antibiotics produce the same effect?

Oh, and last night- went to sleep at 9:00 and slept straight through until this morning. Now we both feel good!!

Just got back from the rhuematologist- I think he was very good, listened and asked alot of questions. He had actually reviewed her file. He thinks its not PANDAS based on her ASO titers, which have never tested high enough to be a concern in and of themselves. She did seem to experience discomfort when he checked movement of her joints, but was able to move them OK. He's getting some more testing and we'll do a follow-up in a month. So, I'm satisfied that he's doing what he can and if its not PANDAS, ok-good to know. BUT IT IS SOMETHING! There has to be a reason why her improvement is so dramatic with zithromax.

[Isabelle]

great news! :) glad to hear improvement on allie. i'll keep that name of antibiotic for future references in case.

[peglem]

Kathy, you brought up the clostridia issue.

I found this:

http://www.ncbi.nlm.nih.gov/sites/entrez

Med Hypotheses. 1998 Aug;51(2):133-44. Links
Autism and Clostridium tetani.Bolte ER.
Autism is a severe developmental disability believed to have multiple etiologies. This paper outlines the possibility of a subacute, chronic tetanus infection of the intestinal tract as the underlying cause for symptoms of autism observed in some individuals. A significant percentage of individuals with autism have a history of extensive antibiotic use. Oral antibiotics significantly disrupt protective intestinal microbiota, creating a favorable environment for colonization by opportunistic pathogens. Clostridium tetani is an ubiquitous anaerobic bacillus that produces a potent neurotoxin. Intestinal colonization by C. tetani, and subsequent neurotoxin release, have been demonstrated in laboratory animals which were fed vegetative cells. The vagus nerve is capable of transporting tetanus neurotoxin (TeNT) and provides a route of ascent from the intestinal tract to the CNS. This route bypasses TeNT's normal preferential binding sites in the spinal cord, and therefore the symptoms of a typical tetanus infection are not evident. Once in the brain, TeNT disrupts the release of neurotransmitters by the proteolytic cleavage of synaptobrevin, a synaptic vesicle membrane protein. This inhibition of neurotransmitter release would explain a wide variety of behavioral deficits apparent in autism. Lab animals injected in the brain with TeNT have exhibited many of these behaviors. Some children with autism have also shown a significant reduction in stereotyped behaviors when treated with antimicrobials effective against intestinal clostridia. When viewed as sequelae to a subacute, chronic tetanus infection, many of the puzzling abnormalities of autism have a logical basis. A review of atypical tetanus cases, and strategies to test the validity of this paper's hypothesis, are included.

PMID: 9881820 [PubMed - indexed for MEDLINE]

Just a theory, but one that makes sense to me. I followed up with some "look-see" on clostridia tetani and found that one of the 2 toxins it gives off is dependant on zinc (that info found on the wikipedia article)

[Lara]

I wonder which type of Clostridia McCandless meant in her book. Anyone know? I found an interview with her online but it just said "clostridia", and didn't say which sort. Maybe she meant all sorts. hmnnn

peglem, do you have this site?
http://www.neurotransmitter.net/autismclostridia.html

[RathyKay]

Sorry I'm late. I'm having a crazy week. But, I did finish Harry Potter.:o Anyway, I don't know any more about the Clostridia than I quoted you. I don't think it fits Tom, so I haven't done any more investigation. I did look at Lara's link a few days ago when I was too tired to reply. It's all very interesting. But... what do you *do* about it? How do you stop the cycle? (Have you figured that out yet?) I read wikipedia and saw the zinc dependency you were talking about. Does that mean it needs zinc? Because I thought most autistic kids ran low on zinc and did better with more? (And I do know there is such thing as too much. We had Tom borderline too much for awhile. We also had him too low, when he was on Depakene, and his hair was falling out. I don't miss those days.) I looked up zinc on wikipedia and it says zinc is good for killing some pathogens in the gut.

If you don't know what to do either, I only have one suggestion. Try contacting the authors of the PubMed study, or any of the authors listed on Lara's link. Ask them what they recommend.

I'm glad to hear the zithromagic is still there. Are you pumping the probiotics and S. Boullardi in between doses?

[peglem]

I'm kinda extrapolating theories on the zinc issue...

1. Its just one of the clostridia produced toxins that needs zinc...so, could that produce low zinc levels? The theory being that the toxin binds zinc.

2. Could that be a reason for improvement from chelation, since HM chelators also chelate zinc? Does that inactivate one of the toxins?

3. Could this also account for impaired immune system? Zinc levels low due to toxins making it unavailable for immune system usage?

from Rathykay;
It's all very interesting. But... what do you *do* about it? How do you stop the cycle? (Have you figured that out yet?)

No, I haven't quite figured it out yet. I've been looking and looking for my copy of Children with Starving Brains just can't find it. But it seems to me that a round of Vancomycin, with boulardii and probiotics, followed with plenty of zinc wuld be the best plan of attack. I want to bring this up with my daughter's pediatrician and see what he thinks, which is one of the reasons I want to find that book. (Maybe I'll buy him a copy for Christmas). I think he'd be willing to try it and he's pretty good about finding a way to get insurance to cover stuff.

Rathykay again:
I'm glad to hear the zithromagic is still there. Are you pumping the probiotics and S. Boullardi in between doses?

Absolutely. She finished the zithro 2 days ago.

[RathyKay]

Peglem, I'm not sure if you're following Kristen and I over on the Biomedical Treatments thread (http://brain.hastypastry.net/forums/showthread.php?t=21542), so I thought I'd bump this thread to get your attention, since I hate starting new threads. (Not that I have any answers... just a few more questions for you to ponder.:o) Kristen has started a fructose conversation with Hal (halsgluten) over on GS/CD (http://brain.hastypastry.net/forums/showthread.php?t=17225). Hal posted a link to this lovely article http://www.greatplainslaboratory.com/newevidence/antifungal.pdf. Be sure to read it in great detail. Okay, so I skim over the names of the chemical compounds and organic acids, and I didn't worry a whole lot about the details of their study. The part that got me thinking of you is under the Discussion section, second paragraph page 7.
Berg reported that oral antibiotic treatment disrupts the normal ecology of the GI tract, allowing certain antibiotic-resistant indigenous bacteria to overpopulate while there is as much as a thousand fold decrease in the total number of anaerobic bacteria; following this overpopulation, these bacteria translocate from the GI tract to the mesenteric lymph nodes and possibly to other organs. Organisms of the Clostridium family, such as C. botulinum, C. Tetani, and C. perfringens, are resistant to most of the broad-spectrum antibiotics commonly used to treat otitis media.
(Otitis media is an ear infection, but you probably already knew that.) Anyway, I guess I didn't know about these bacteria translocating to the lymph nodes (and I don't know mesenteric... I'm assuming those are ones in the local GI area?). But, I did kind of wonder if Allie's strep might be hiding in the local lymph nodes (which are probably not mesenteric) and that's how it keeps coming back? Like I said... no answers, just something to ponder, if you didn't already know about translocating bacteria.

And if you're curious for Kristen's sake... there is some fructose discussion on the bottom of page 9, left column.

[Kristen (ColeysMom)]

Kathy you are a GENIUS to bring these 2 conversations together!!!!! I had forgot all about it (plus didn't see most of it)!

I feel like I've just had an epiphony!!!!

Meantime, are ya following the thread with Hal on the gluten board...

And I think I'm coming to a similar conclusion with Dave (I'll post our conversation later...)

At this point I'm starting to think it's all about specif microbs...not just randomly bad over growth, but SPECIFIC ones...and I bet that varies by person, and then there the idea of a combo....

And, hang on a sec...I hate to keep bringing the vaccinations into this whole thing, because in a large way I don't believe they are responsible, but perhaps contribute, given the right (or wrong really) environment...

AND I'm a chemical/biological moron...so really don't even hold a lot of stock in my own opinion on the subject...

But, Holy crap Pegs, is it wrong to suspect DTaP (given at 2, 4, 6, 12 mos)

which I'd like to note, Coley did HORENDOUS with! Not as bad as the MMR/ChickenPox/RSV combo...but pretty damn miserable!

Crap in that shot:
http://www.vaccinesafety.edu/components-DTaP.htm

More specific crap depending on the manufacturer (follow the links):
http://www.vaccinesafety.edu/package_inserts.htm

[Kristen (ColeysMom)]

Pegs, I think this amounts to the same thing in your post, but thought I'd add it for a bit more detail:

Title Gastrointestinal Microflora Studies in Late-Onset Autism
Author(s) Sydney M. Finegold, Denise Molitoris, Yuli Song, Chengxu Liu, Marja-Liisa Vaisanen, Ellen Bolte, Maureen McTeague, Richard Sandler, Hannah Wexler, Elizabeth M. Marlowe, Matthew D. Collins, Paul A. Lawson, Paula Summanen, Mehmet Baysallar, Thomas J. Tomzynski, Erik Read, Eric Johnson, Rial Rolfe, Palwasha Nasir, Haroun Shah, David A. Haake, Patricia Manning, and Ajay Kaul
Identifiers Clinical Infectious Diseases, volume 35 (2002), pages S6–S16
DOI: 10.1086/341914
PubMed ID: 12173102
Availability This site: PS (http://www.journals.uchicago.edu/CID/journal/issues/v35nS1/020069/020069.web.ps) | HTML (http://www.journals.uchicago.edu/CID/journal/issues/v35nS1/020069/020069.html) | PDF (http://www.journals.uchicago.edu/CID/journal/issues/v35nS1/020069/020069.web.pdf) (154.2k)
Copyright © 2002, the Infectious Diseases Society of America.

Abstract Some cases of late-onset (regressive) autism may involve abnormal flora because oral vancomycin, which is poorly absorbed, may lead to significant improvement in these children. Fecal flora of children with regressive autism was compared with that of control children, and clostridial counts were higher. The number of clostridial species found in the stools of children with autism was greater than in the stools of control children. Children with autism had 9 species of Clostridium not found in controls, whereas controls yielded only 3 species not found in children with autism. In all, there were 25 different clostridial species found. In gastric and duodenal specimens, the most striking finding was total absence of nonhttp://www.journals.uchicago.edu/ucp-entities/ndash.gifspore-forming anaerobes and microaerophilic bacteria from control children and significant numbers of such bacteria from children with autism. These studies demonstrate significant alterations in the upper and lower intestinal flora of children with late-onset autism and may provide insights into the nature of this disorder.
http://www.journals.uchicago.edu/cgi-bin/resolve?id=doi:10.1086/341914&erFrom=6057154258925123763Guest

[Kristen (ColeysMom)]

here's some more interesting stuff:

http://www.greatplainslaboratory.com/camarticle/page1.html

[RathyKay]

On a slightly different tact... I was talking to my realworld friend and mentioned the multiple strep infections. She asked if *you* and the rest of the family have been tested? One of her online friends' (have no idea which forum... not here) child had recurring strep infections. They later found out that the mother was the carrier, with the mother only having mild symptoms. Anyway, I'm not sure if your family has been tested, but it seemed like a relatively easy thing to do. "Typhoid Peglem";)

[RathyKay]

Our Food and Wine section comes out on Wednesday. I found this article interesting...
http://www.mercurynews.com/foodheadlines/ci_7200687?nclick_check=1
(I should point out that our paper's policy is to post articles for free for seven days. So, if you're interested, read now.) Anyway, this article talks about a particular type of yeast in red wine. How it can cause an off-smell. How it's unpredictable... differing from bottle to bottle. How hard it is to get rid of. Just reminded me of our yeast battles.
There are hundreds of strains of Brettanomyces, each with its own characteristics. Some strains produce more desirable aromas and flavors, while others are a turnoff to most consumers. In addition, Bisson says, Brett is able to adapt and continue to grow.

"You can knock them down, but then it will come back," she adds.
The solution appears to be to filter the wine. I just need to find an appropriate filter for Tom.:p

[RathyKay]

Someone posted this on my DAN! doctor's Yahoo group. I had to search to find it on the web.
http://health.groups.yahoo.com/group/Autism-Mercury/message/213277
The abnormal production of biofilm by resistant strains of microorganisms may be a possible etiology of why many of our patients who do not have positive stool cultures for yeast or pathogenic bacteria do well when placed on antifungals and antibiotics, yet relapse when they stop. The biofilm produced by these resistant organisms can only be seen by electron microscopy and makes it difficult to culture these bugs. This theory might also explain subtypes of our ASD subpopulation who have abnormal behaviors, such as head banging or agitation, that seem to be gut pain related, yet again have negative studies. The third subset that this seems relevant for is the group of children that have recurrent strep infections, OCD, perseverative, or repetitive behaviors who get worse in the spring and fall, yet may not test positive for strep.
We're going to Georgia at the beginning of next month. I think I'll be pursuing this a little more when we get back.

[peglem]

Well, after @ 3 1/2 months on profilactic antibiotics, Allie's streppy behaviors started coming back. I took her for a strep test, which came back negative. The behaviors continued to increase and I took her back to the doctor a week later- still negative, but asked the doctor about trying zithromax since it is the antibiotic that always had the most drastic improvements in the past. They don't want to give her zithro prophilacticly- said it'll tear up her stomach. But, I did get them to give her a 5 day course (interupting the penV proph.). She started on Thursday evening- Friday she did great and today (Saturday) she's fabulous. I call it zithromagic!

I'm posting this here because I have a new theory that makes this relevant. Biofilms! Been looking at research and they've been finding that zithro is effective in breaking the protective barrier that biofilms form. It would also explain why the strep is chronic. Here's my understanding: The biofilms form these colonies and they are good at defending the film from invaders-perhaps even "disguising" themselves from the immune system. (why Allie's ASO titers are not particularly high) But, when the biofilms become overpopulated, they send out mobile organisms (unprotected microbes) to "found" new colonies. I think this is when we are able to get the positive strep tests. The antibiotic kills the loose bacteria, but doesn't touch the "mothership", which cycles to release more microbes. The zithro damages and weakens the mothership (which is probably huge by this time) knocking it out of commission until it has time to rebuild/repair its defenses.

Know what else? When the streppy behavior comes back- Allie does ALOT of things to put pressure on her lower abdomen. She's not doing that now with the zithro.

So that's my theory....Oh, I almost forgot- one of the things that bothered me about the DAN dr.s theory is that they had no way to test for biofilm. Very exciting- NAU scientists have just developed a test that detects biofilms. It tests for the chemicals (quorum sensing?) that the biofilm microbes use to communicate with one another. It hasn't been marketed yet, but that would be a fabulous tool when it is.

Questions I still have:

Does the biofilm block (if it is intestinal) absorption of nutrients?

Does it "steal" nutrients from the host to feed the colony?

Can biofilms slow down bowel movements?

Can biofilms move into the body proper, to form films in/on other organs?

Can biofilms enable bacteria that normally need air to survive in areas of the body that would be hostile to them if they were independent mechanisms?

[Kristen (ColeysMom)]

WOW Peg!!!

Any info on what will finally kill that 'mothership'?

I don't understand your last question, can you reword it?

We got a call from the GI today about Coley's labs. Most came back normal, D was low, and a bunch failed testing because the blood began clotting. BUT, happy happy happy dance, because he's built normal immunity to MMR and chicken pox!!!!! :D So no more of those for him!!!! The Dr's sending a written report and I'll update better when I get that.

Meantime we've been giving him his s.boulardi...it took us a while to figure out how to do it consistently...I give it to him in yogurt every day. Today is day 5 without interuption. And it does seem to be helping his appetite and his processing...but since it's only day 5 it's hard to say for sure.

The whole biofilm thing is interesting, I'd like to look into it more before we see the GI again on the 26th.

[peglem]

On that last question, I was thinking mostly of GABHS- which they say only survives in the upper throat and sinuses- (I think because it needs the O2 found there). What I was wondering is if these bacteria could somehow have that need met through the functioning of the biofilm- can the biofilm enable them to survive elsewhere by chemically synthesizing what they need?

Another thought that just occurred to me- I'm pondering things I know little about: Does normal, "good-guy" intestinal flora form biofilms? Like is this an issue of increasing the good bacteria IN a biofilm, or is biofilm formation inherently bad for our intestines? My gut tells me (pun intended) that its the latter of the 2.

[Kristen (ColeysMom)]

Hmmmm! Interesting! I gotta read up on this stuff!!!!

[Kristen (ColeysMom)]

Ok, I've read a little, and I'm already getting confused! This stuff is just NOT my strong point!

Anyway, I'm getting the impression that a yeast overgrowth, or this 'infection' that the Dr was suggesting could be causing Coley's food intolerances IS biofilm...he described it as a build-up between the vili that would prevent normal absorbtion & digestion...am I mixing things up????

Also, what is the difference between biofilm and SIBO, the location within the GI tract?????

I did read about various types of bacteria and fungi, which generally stay in one area of the gut or the other, but that they can migrate, which is part of the problem, but that they can also join forces with 'foriegn' micro-organisms (viruses, bacteria, and fungi)...so to me it seemed like they were basically the same in principal, just perhaps different in location and maybe in its make-up...

In any case, how the heck do you get rid of it? From what I've read it's resistent to antibiotics, but you wouldn't want to use that anyway cuz it kills the good stuff which will only make the situation worse...do I get that right?

I keep thinking about my cat's water dish...and how I often just refill it, then at some point she complains enough that I pick it up and find GROSS slime on the bottom and wash it out...but it doesn't rinse out easily...it needs to be scrubbed...so I've got this picture in my head that the only material that one could effectively 'scrub' the intestine with is raw broccoli (LOL)...or fiber????

But I also read that it thrives on sugars and sacchrides (sp) but that in some cases glucose & maltose actually stunt it's growth (doesn't kill it, just doesn't feed it)...could that be why Coley reacts to fructose??????? And maybe what he's reacting to in dairy (lactose)????

UGH!

And just because I can't manage to read a single thing without finding some way to convict myself in this...is it possible that I've passed biofilm to him??? I can't help thinking about the gazillion prescriptions of antibiotics I took as a child fighting off a chronic UTI and kidney infection, and later chronic sinusitis...as it stands today I can't even say antibiotic without dealing with the inevidible yeast overgrowth...

TMI WRNING, also, while in college I dealt with some sort of infection that no Dr could figure out or resolve...it acted like a yeast infection but responded to nothing. My eating habbits then were horrible, mac & cheese, subs & pizza most days...after college it went away, but does recurr now & again. I have on my own connected it to poor eating...which tends to line up with those types of things that feed yeast. Cranberry juice and plain yogurt seem to help a lot!

During the same time period I also had laser treatment on my cervix for precancerous cells...which (as you know) a virus has now been implicated in the development of...I can't help thinking that my system is riddled with nastiness...and that it could have been that 'scum' that caused the premature rupture of my membrane while I was pregnant with Coley.

I'm feeling like I need to treat the whole house for this...how the F do you get rid of it?!

I read that they rid pipes & such of biofilm with the use of enzymes...could the same approach be used for the GI tract? What type of enzymes could be used???? Digestive?

BTW - did you read how PPIs and acid reducers can exasporate the problem, perhaps even set the stage for it...guess what Coley spent a good deal of his infancy on! :mad:

OH CRIKIE! IF my understanding is right about this 'over-growth' being the same as biofilm, then based on what the Dr told us:

Yes, biofilm can block nutrients,

and

Yes, biofilm slows motility (which leads to constipation due to hard dry stools)

The others I'm not sure about. Kathy, do you get this stuff? I bet Hal could help...I'm going to ask him to swing by...

[Kristen (ColeysMom)]

Check this out: http://www.eurekalert.org/pub_releases/2006-10/bu-bur101206.php


A Binghamton University biologist's discovery of a molecule that induces the dispersion of biofilms will likely mean a sea change in health care, manufacturing, shipping and pharmaceutics over the coming years.

David Davies has found and is in the process of synthesizing a compound that will cause biofilm colonies to disperse, thus leaving individual bacteria up to 1,000 times more susceptible to disinfectants, antibiotics and immune functions. It's a discovery that will most certainly drive worldwide biofilm research in new directions and that could help put some of the most virulent cells in all of nature out of business.

Biofilms are complex aggregations of bacteria marked by the excretion of a protective and adhesive matrix. They develop almost anywhere that water and solids, or solids and gases meet, which means they are virtually everywhere. They are formed when individual microorganisms embed themselves in a gelatinous structure of their own making. When traveling alone in planktonic form, most bacteria are of small consequence and generally easy to manage, even with antibacterial hand soaps. But when they form biofilms, bacteria seem to gain super powers. In human terms the characteristic "slime" of biofilms, which comprises organic polymers that can grow to several centimeters thick and cover large areas, spells all kinds of big trouble.

[halsgluten]

Also, what is the difference between biofilm and SIBO, the location within the GI tract?????

SIBO Small Intestine Bacterial (Biofilm) Overgrowth. The large intestine normally has lots of bacteria, the small intestine normally has little. The only way there can be large amounts of bacteria in the upper small instestine is to form biofilms.

Fungus is a major constituant of most any intestinal biofilm.

In any case, how the heck do you get rid of it?
Anti overgrowth diet, that list, a wide variety of whole, fresh (fresh cooked and fresh frozen OK in my book) The result of refining foods is to remove all parts except the pure proteins, fats, and starches, the natural antifungal chemicals are removed in the refining.
Anti-overgrowth medication especially antifungals, i.e., Nystatin (I want to try)
Probiotics

could effectively 'scrub' the intestine with is raw broccoli (LOL)...or fiber???? Whole (brown) rice is supposed ly rather abbrasive, but it is a starchy grain, but it is whole.
but that in some cases glucose & maltose actually stunt it's growth (doesn't kill it, just doesn't feed it
Since glucose is the the most common sacharide in nature, a great many intestinal biofilm species feed on glucose.

Hal

[Kristen (ColeysMom)]

Thanks Hal!

Nystatin stinks...it's not all that effective. Dyflucan is better, but I've read that yeast can become resistant in the same way that bacteria can, so it might be a better option to find more 'natural' ways to irradicate it.

But, I don't really see why your doctor wouldn't prescribe it for you if you wanted to test the theory out...both are relatively harmless drugs. And I guess if you see improvements after taking it, it would certainly point to a conclusive problem.

What are your thoughts on passing this type of a thing between mother & child?

And since it seems completely possible that biofilms can spread beyond the gut into other organs, and perhaps even into the blood system...how the heck could one treat an infection that has gotten that bad? It doesn't seem like an oral treatment (including diet modifications) would reach that far. Are drugs really the only option?

Could this be why it seems to recurr with any given opportunity?????

And I have a question in my head about sunlight that I just can't quite formulate...

If you think again about stuff like pond scum, and how it tends to thrive on dark overcast days, could soaking up the sun help rid the body, or no because it's incased (so to speak) by skin and muscle??? Am I confusing biofilm with algea????

And sorta on that same wave length, when yeast is really bad it does lead to light sensativity...so is that a protective thing by the microorganisms, or are they somehow thriving in the warmth???

I can't help thinking about the fact that the biofilms are more than just yeast...how do you effectively attack all that could be tangled into that mess without giving rise to a different opportunistic infection or outbreak.

Thinking about pond scum again...I can't help but notice that salt water doesn't have that sort of problem...I guess one reason is because it's in motion, but does the salt have anything to do with it??? Seems like it would...and on that thought I can't help linking it with epsom salts... Coley tends to get these rashes on his butt (I may have mentioned this in the other thread)...they are pustual pimply type sores, and they tend to migrate down his legs to his knees. He complains that they hurt and they certainly look as though they do. They come and go and the best I can do is speculate that they are tied to dairy intake, but I'm not 100% sure. Anyhoo, we have noticed that a good soak in an epsom salt bath (a good amount) generally disapates the rash by morning.

I'm feeling compelled to give him a sea salt drink or an epsom drink somehow...maybe salt pills (but those are sodium, right?)...but would not without a good reason... From your understanding should salts be a helpful agent in a biofilm battle???? I might leave a cup of water on the counter and see what happens if I add salt after the scum builds.

I know you are not a Dr, but have you been able to give any thought to these things??? If not, I guess I know what my next research project is. :p

UGH...lots' to think about!

[peglem]

Do not drink epsom salt!!!!!!! It will cause horrible diahrrea!

[peglem]

What I speculate is that to eradicate gut biofilms is you need something that can cut through the protective coating they have and then kill the organisms that make up the colony.

Here's what happened the last time (starting Thursday night) I used zithromax with Allie- (zithromax is being studied in CF for its ability to break up respiratory biofilms)

Friday: immediately behavior was much better, but by Friday evening, after the 2nd dose- hyperactivity is amped

Saturday AM : stinky pee and rashy genitals & clueless mom. SIBs and aggression escalating throughout the day. Zero appetite.

Sunday: repeat of Saturday

Monday: AM- mom's coming around- gives diflucan (I hate giving this because it often seems to exacerbate behaviors) By Monday afternoon, MUCH MUCH improved.

Now, throughout all this, I'm also giving probiotics and boulardii.

My speculation:

Since she had been on profilactic penicillan prior to this latest bout of trouble, I'm speculating that she does have biofilm problems. The profilactic was keeping the bacteria released by the biofilm at bay but not touching the protected ones. The zithro (I think) broke open the biofilm and killed some bacteria, but resulted in the release of lots of yeast. I've never seen a yeast problem come up so immediately! The diflucan did a good job on quelling the yeast. This morning there was no stinky pee and the rash (which I treated with Nystantin cream) is gone. Now she goes back to the prof. penicillan, which I hope will keep killing the bacteria to keep the biofilm in check. I suspect it has not been completely eradicated- but this gives me a good theory to present to her PCP the next time I think she needs zithro.

[Kristen (ColeysMom)]

Espsom salt is used to aid with constipation, so that makes sense. I would imagine it's because it pulls fluid into the digestive tract. I'm sure the dose has something to do with it's 'effectiveness' as a laxative. My carton says 1-2 teaspoons in 8oz for children 6-12yo.

I don't want to give the impression that I'm ready to do this...I'm just saying that this is the logical conclusion I am coming to, but not sure it makes sense. If it turns out to make sense, then I would try to figure out how to add 'salts' to his diet effectively and safely...ya know??

We used to deal with constipation, but don't any longer since fructose restriction (I still find it ironic that I removed all fiber from his diet and he went from being constipated to not...welcome to bizzaro world!).

[peglem]

How do you know if the biofilm is even there? They are good at hiding from the immune system.

[Kristen (ColeysMom)]

You don't I guess unless you treat it and there is improvement.

I'm not all together convinced, but it seems to be making a TON of sense in our case. Particularly when all his other testing (metabolic and GI) are coming back negative for the types of things that would present in the fructose intolerance and the behavior/developmental issues.

Plus having the GI draw the same conclusion makes me feel even more strongly about the possibility.

So, as long as we can 'test' the theory in a safe way, I'm all for it. I wouldn't want to give him drugs, but if I can do something, like the s.boulardii or the yeast errad diet or increase his exposure to the sun or similar things, ya know, stuff that shouldn't negatively effect him, but could positively improve the situation IF this is the problem...

There was a point in time when I cared about slapping a label on whatever it was that was screwing him up...I don't anymore, I just want it to go away...so I don't even care if we start fiddling with things here that remove the 'evidence' for the docs...I'm so passed that! I just want his mind clear and his body healthy - period!

But it's only 3 weeks until we see the GI again, given that his celiac testing came back normal, this by default is the docs leading theory...I will ask him all these questions too. Most importantly though, how we attack it successfully.

I did read something about alternating antibiotics and antifungals...that idea scares the crap out of me! I'm hoping he throws out the idea of enzymes, I think that makes sense, but I can't understand how that would effect anything outside the GI tract.

I could be wrong in my thinking, but IF this is the source of his issues, then I don't understand how it could cause his seizures or his liver disfunction unless it has broken out of the GI tract...so how the heck do we tackle that?????? Well I guess the liver disfunction could cause the seizures...but you get my gist...something isn't making total sense to me here...

But I'm not a Dr, and when Dr. Buie and Dr. Yuan say that they have seen great progress with spectrum kids after enzymes & probiotics, I gotta believe it does make sense somehow, I just can't figure out why...maybe that gut brain connection we recently read about??????

Maybe the infection isn't that far, just interupts things so badly that it effects the 'connection'??????

But the blood sugar swings have me really confused...I gotta go reread some stuff Hal posted, he explained how it IS possible that yeast overgrowth can give rise to LBS...there is so much swimming around in my head right now...

And I still can't shake the whole idea that I infected him! AND that he had a staph infection, UGH of all places in his feeding tube, when he was 3 days old, weighing a whopping 2.5 pounds :(, and was treated of course with a 10 day antibiotic regimine...

Not drawing a conclusion just yet, just exploring the possibility (throwing against the wall to see if it sticks...) and ways of 'testing' the idea safely...

[peglem]

I did read something about alternating antibiotics and antifungals...that idea scares the crap out of me! I'm hoping he throws out the idea of enzymes, I think that makes sense, but I can't understand how that would effect anything outside the GI tract.

I don't think you really need to alternate them-why not hit both the yeast and the bacteria at the same time? Otherwise it seems like you'd just be strengthening one while killing the other. The reason (I think) it would affect stuff outside of the GI tract is because the biofilm in the GI tract blocks the absorbtion of the nutrients that the rest of the body needs to function. I don't know how much good enzymes could do- they can break down food, or maybe even the biofilm glue- but then you either have absorbable nutrients feeding the biofilm or a release of bad bugs into the GI tract. Just speculating...

I could be wrong in my thinking, but IF this is the source of his issues, then I don't understand how it could cause his seizures or his liver disfunction unless it has broken out of the GI tract...so how the heck doBut we tackle that?????? Well I guess the liver disfunction could cause the seizures...but you get my gist...something isn't making total sense to me here...

As i said above, blocking nutrients would essentially starve other organs of what they need to function properly. I wonder too, if biofilm might block pancreatic enzymes from reaching the GI tract? Seems like it could be a 2 way block.

I'm not a Dr, and when Dr. Buie and Dr. Yuan say that they have seen great progress with spectrum kids after enzymes & probiotics, I gotta believe it does make sense somehow, I just can't figure out why...maybe that gut brain connection we recently read about??????

Maybe the infection isn't that far, just interupts things so badly that it effects the 'connection'??????

But the blood sugar swings have me really confused...I gotta go reread some stuff Hal posted, he explained how it IS possible that yeast overgrowth can give rise to LBS...there is so much swimming around in my head right now...

And I still can't shake the whole idea that I infected him! AND that he had a staph infection, UGH of all places in his feeding tube, when he was 3 days old, weighing a whopping 2.5 pounds :(, and was treated of course with a 10 day antibiotic regimine...

At this point does it make any difference what the source of infection is..unless it helps you prevent future infections? Staph infection is mui serioso..I sure wouldn't trust a doctor who didn't treat it with antibiotics.

Not drawing a conclusion just yet, just exploring the possibility (throwing against the wall to see if it sticks...) and ways of 'testing' the idea safely...

I just read about a new test devised by NAU scientists that tests for biofilms by detecting their "quorum sensing" chemicals. Not available yet...but they're trying to find a company to manufacture and market it.

[Kristen (ColeysMom)]

Oh, I'm not suggesting that his infection shouldn't have been treated, just noting the fact that at 29 weeks gestation he certainly didn't have the flora to appropriate deal with an infection like that (or the ramifications of an antibiotic course). And it's also an interesting thought that his issues seem to stem so much from his digestive tract, and that was the source of that infection...just wondering if this is where the 'mothership' could be....and also wondering if I should consider treating myself...

From what I read, they alternate to prevent the resistance. I would also assume that breaking it down gives the body the chance to build the appropriate antibodies to fight it in a more natural way...but that's a guess.

Yup, that makes sense, blocking nutrients needed for proper function...and knowing his liver panel generally comes up just outside normal could fit with that too...his temp used to be always low too...when looking into the fructose stuff previously I did find some documentation about body temp needing to be at 98.6 in order for proper enzyme and hormonal functioning...which begs the question, which came first...

His temp is normal now (used to be consistently below 97.5), yet he still can't tolerate fructose, so his temp is not causing the intolerance?????? General poor functioning liver, certainly does seems possible...

On the digestive/pancreatic enzymes, I don't know if or how it would work, but when I read about the biofilm thriving in the presence of PPIs & acid reducers, it was because the stomach acid was not present. That in the healthy situation stomach acid should prevent the biofilm from forming. So if it could be broken down to some extent I would think the acid should be able to take over. I think the main objective is to break it up...as a cluster it's impossible to fight (even with meds)...divide and conquer seems to be the approach that is showing the most promise.

On the acid idea, I wonder if something like citric acid could help...another test for my cup :rolleyes:

...............

I just noticed your 11:45 post...I think we were posting at the same time...

I had read about the biofilms with CF patients and the thing that popped into my head:

Coley gets this cough often...we see so many dam Drs that I have avoided asking to see a pulmo, as I haven't seen it turn into anything ya know...

But it's always there, and it scares me because of his likely poor functioning lungs due to his prematurity. I've kinda been waiting for asthma to hit, but so far so good... He runs around playing and suddenly he's coughing up flem. It's WAY worse in the colder months. And when he gets sick, almost doesn't matter what type of bug it is, he's got a lingering nasty wet cough for weeks and weeks after the rest of the bug has long gone.

So of course my fricken overactive imagination kicks into gear thinking - fabo he's probably got biofilm in his lungs too...and why not they were cramming all sorts of **** into his lungs...also I know a necessary thing, as breathing facilatates life, so we are happy they did, but it's just one more 'thing' ...

When I talk to Dr. Y about all this stuff, I will now raise the stupid cough stuff too...I didn't find anything about the specific drug being used, just that they had determined that it was likely the biofilms that were at the route of the progressive damage in the lungs...I wonder what his thoughts are on treating a potential gut infection with zithromax...

hmmmmmmmmmmmm! All very interesting!

[peglem]

Alternating different antibiotics to avoid resistance makes sense, but alternating the between antifungal and antibiotics doesn't make sense to me. The yeast thrives in the presence of antibiotics. It makes more sense to me to kill both the yeast and bacteria at the same time.

As far as the acid thing- you should not have acid in the intestines (should you?). I wonder if the acid in the stomach besides breaking down foodstuffs also kills bacteria before they move into the bowel. But, if you've already got intestinal biofilm, I don't see how eating acids would improve the situation. Stomach acid is way more caustic than anything you could safely feed your child. That's why reflux is so dangerous- it "digests" throat tissue. That's also why the stomach acid is somehow (have to find my copy of The Second Brain) neutralized before moving into the intestines- THERE would be some leaky gut!

Yes, the biofilm has to be broken up to fight it, but I don't think just breaking it down is enough unless the immune system can get to it quickly enough before it re-forms.

If you google "zithromax biofilms" you'll find tons of stuff @ zithro breaking down biofilms in CF.

[Kristen (ColeysMom)]

I dunno, I can't explain it, I just read that one course of action was to alternate the 2...

Perhaps it's not enough time between to allow a full explosion, but agree that a dual approach would seem more effective...but you gotta consider that they will both kill good stuff too...maybe that has something to do with it????

Do you want me to see if I can find it?

Ya you're right, didn't give it enough thought, gastric acid is obviously WAY more potent...:rolleyes:

Where's the gallbladder? That's where acid is stored...how does it get there, does it need to travel through the intestine?

Wait, I think I need to backtrack a second...is anything absorbed through the stomach? Sugar is right? anything else? Hey WAIT!!!! Could that be the source of his LBS...ohh I need to go reread a ton of stuff!

The intestines absorb nutrients (as in protiens, lipids, minerals and vitamins) right? That's done via enzymes, right?

Where are starches processed? In the stomach? No that can't be right.... Carbs & starches in the intestine???? Holy cripes, this is what's keeping his bs stable....

But whats the deal with fats??? They hang in the stomach for a long time...and he's reacting to those too....

I think by the time anything gets to the intestines it's broken down to the point that it's just mainly absorbed or discarded, right?

So what does all this tell us?

If nutrients aren't being absorbed properly then there could be infection in the intestine? Well I guess if things aren't being broken down enough in the stomach that could be true too...:confused:

but does it really matter, I mean would treatment be different based on the location of the infection? Or the type of microbes?

I guess certain probiotics can reach certain places to help fight the battle, but they certainly can't win the war on thier own, can they?

Ugh, alright, I don't think my meandering thoughts are contributing anything here...I need to go read more & come back...

[peglem]

I did a little studying after my last post. The only thing absorbed from the stomach is alcohol. Most nutrients are absorbed into the body from the small intestine. The gallbladder is attached to the liver and stores the bileSALTS made in the liver until it (the GB) is signalled to dump them in the sm. intestine. I can't remember quite- but insulin is produced in a part of the pancrease (isle of langerhorns-don't know why I remember that!) which also secretes a bunch of enzymes-

well, there are a lot of sites you can go to that have info on the GI tract and how it works and I bet they have more reliable info than I do!

[RathyKay]

I'm back from my trip to Georgia. Had a wonderful time at Mr. Kay's brother's wedding and managed to see my relatives as well. My! This thread has been busy in my absence! Anyway... random musings from your posts..

According to this link that I already posted (http://health.groups.yahoo.com/group/Autism-Mercury/message/213277) Our normal flora also produce a natural biofilm, but resistant organisms produce their own biofilm which then takes over, preventing the normal flora from flourishing.
Does the biofilm block (if it is intestinal) absorption of nutrients?

Does it "steal" nutrients from the host to feed the colony?
I think they steal the nutrients, as opposed to blocking the absorption, but it might be both.
Can biofilms slow down bowel movements?
I've had a similar discussion on yeast overgrowth with a realworld friend. For awhile, Tom either had rock-hard poop, or I could give him fruit which seemed to soften the poop, but make it harder for him to push out. My friend said she has read on another forum some anecdotal stories of similar situations. The fruit feeds the yeast; the yeast roots in the intestines make it harder to push. Or is it the yeast by-products making it harder to push? If the yeast overgrowth is the same as the biofilm, then we're talking the same thing.
In any case, how the heck do you get rid of it? From what I've read it's resistent to antibiotics, but you wouldn't want to use that anyway cuz it kills the good stuff which will only make the situation worse...do I get that right?

I keep thinking about my cat's water dish...and how I often just refill it, then at some point she complains enough that I pick it up and find GROSS slime on the bottom and wash it out...but it doesn't rinse out easily...it needs to be scrubbed...so I've got this picture in my head that the only material that one could effectively 'scrub' the intestine with is raw broccoli (LOL)...or fiber????
Somehow, I've always had a mental image of steel wool.:o Raw broccoli sounds a little more practical. At the bottom of the above link I posted, they tell their protocol for removing biofilm, but it's not detailed enough to really help us.
AND that he had a staph infection, UGH of all places in his feeding tube, when he was 3 days old, weighing a whopping 2.5 pounds , and was treated of course with a 10 day antibiotic regimine...
Tom was just about 3 days old when we took him back to the hospital and they hit him hard with antibiotics and anti-virals because they (we) didn't know what the heck was going on. I think he had super-intravenous ones, as opposed to a 10 day course. Sure wish we'd started probiotics sooner.:rolleyes: I'm not blaming the doctors either. I think Tom was probably an hour or two away from death and time was critical.
I could be wrong in my thinking, but IF this is the source of his issues, then I don't understand how it could cause his seizures or his liver disfunction unless it has broken out of the GI tract...so how the heck do we tackle that?????? Well I guess the liver disfunction could cause the seizures...but you get my gist...something isn't making total sense to me here...
Just some speculation here, but as an alternative to "just not getting enough nutrients because of the biofilm thieves"... biofilm doesn't just absorb the nutrients. It also has by-products. (Everything poops.) Perhaps Coley's biofilm's by-products overwhelm his liver?
But it's always there, and it scares me because of his likely poor functioning lungs due to his prematurity. I've kinda been waiting for asthma to hit, but so far so good... He runs around playing and suddenly he's coughing up flem. It's WAY worse in the colder months. And when he gets sick, almost doesn't matter what type of bug it is, he's got a lingering nasty wet cough for weeks and weeks after the rest of the bug has long gone.
Is Coley completely dairy-free? I have so much less mucus when I'm sick since going DF. I was always clearing my throat as a kid. Bec, who used to post over on Child Neuro, talked about all the post-nasal drip she had daily that finally went away after five (5) weeks DF. She said it didn't taper off, but was full strength until the end. (Her allergist told her it took 6 weeks DF to get it all out of your system.) Anyway, I guess it could be a biofilm, but I would first wonder about a food allergen.

On the alternating antifungals with antibiotics, that does seem strange. I know for chelation, we're supposed to alternate different antifungals to keep the yeast down.

I think that's all of my musings for now. Not sure if I added any value, but just sorting it for myself...

[Kristen (ColeysMom)]

Here is a simple explanation of digestion.

http://www.enchantedlearning.com/subjects/anatomy/digestive/

But there are a few pieces missing...for example I know that glucose begins absorption in the mouth, not breakdown, absorption. I wounder if pure glucose (and maybe other simple sugars not requiring further breakdown) are absorbed before the small intestine...like sucrose = 50% glucose and 50% fructose...maybe that requires digestion first.

Hmmm...this could explain something that's been bugging me! When you look at the sugar portion of a nutritional breakdown for something, say an avacado, it's broken down like this (http://www.nutritiondata.com/facts-C00001-01c20Tk.html):

Sugars 0.7g
Sucrose 184 mg
Glucose 230 mg
Fructose 253 mg
Lactose 0.0 mg
Maltose 0.0 mg
Galactose 253mg

But, the thing that bugs me is that

sucrose = 50% glucose & 50% fructose, &
lactose = 50% glucose & 50% galactose

...so why not just put them on the chart that way...why is there even a category for sucrose & lactose, ya know...

But MAYBE it's because the glucose and the galactose doesn't require further breakdown before it can be absorbed, but the sucrose & lactose does & therefore is absorbed further down the digestive tract???

and I need more info on the fats too, something isn't making sense to me there either...

I'll go check and post more....but first I need lunch, all this talk about digestion has made me hungry, LOL!

[Kristen (ColeysMom)]

This digestion explanation is better than the other, it answers a few more of our questions:
http://www.mmeade.com/cheat/digestion.html

And here's another good one: http://tuberose.com/Digestion.html
I was hanging on every word in this one until I got to the very last paragraph! I mean I guess I can accept that happy thoughts promote good health, but c'mon it seemed so out of place in this explanation!

And here's another: http://books.google.com/books?id=CUAROKYFhcQC&pg=PA111&lpg=PA111&dq=glucose+absorption+mouth&source=web&ots=5iUxdJcKd0&sig=sBjSW897pMVppNTtalahvhhrQvk#PPA111,M1

So what I've got for answers:

-fat is digested last, therefore sits in the stomach for longer periods of time.
-Glucose alone is unique in that it begins absorption in the mouth
-digestive 'juice' passes through the entire digestive tract. Although it does change as it is mixed with enzymes in the small intestine, and then bile salts in the large...but the gastric acid does pass along with the food.

As for the question about blocking absorption...the way Dr. Y explained it was using his hand. He held up all his fingers and said that along the intestine are villi, very small but look like fingers in the intestine ...on the villi are small somethings that are responsinble for absorbing nutrients. When there is bacterial overgrowth the spaces between the fingers get clogged so that malabsorption occurs. I have a picture he drew too.

Alright, so what does THAT tell us?

I still feel like I need to go back and reread everything...

But good point Kathy about the byproducts!!!!!! I forgot about those!!!!

I still don't quite get the LBS though...unless the microbs are stealing it????? And what's the deal with fructose versus other sugars...could it be that because it is more complex in it's digestion that it offers more time for 'specific' fructose loving organisms to flourish, similarly with fat???? Could their processing of these things be somehow leading to LBS? And how the heck are saturated fats different from unsaturated?

I wonder if a big part of the problem is 'weak' digestive juices...that would line up with seeing enzymes help...hmmmmm...I wonder how you could boulster gastric acid? I would think if the acid is strong enough it would 'digest' all those criters...they are only harmful alive, right? Well ignoring the 'die-off' for the moment...

I know this is getting way off track from your interests...sorry...I'm just trying to make this all jive with what we've experienced...

I'll go read more...

ps - sorry about the ginorous siggy...I can't figure out why it's coming out so big. Photobucket says it's small :confused:

[Kristen (ColeysMom)]

INTERESTING!

http://en.wikipedia.org/wiki/Achlorhydria

Achlorhydria and hypochlorhydria refer to states where gastric acid (http://en.wikipedia.org/wiki/Gastric_acid) levels are either absent or low in the stomach (http://en.wikipedia.org/wiki/Stomach).

Achlorhydria and hypochlorhydria may lead to microbial (http://en.wikipedia.org/wiki/Microbes) overgrowth since the disinfectant (http://en.wikipedia.org/wiki/Disinfectant) qualities of gastric acid are diminished. This can increase the risk of infections in the digestive tract (such as Vibrio (http://en.wikipedia.org/wiki/Vibrio) or Helicobacter (http://en.wikipedia.org/wiki/Helicobacter) infections).


This is a good site on this: http://www.med-library.net/content/view/177/41/


That is not to say that they have no symptoms, however, because the number of non-intestinal disorders which are associated with hypochlorhydria is truly astounding. Because these diseases can be helped by nutritional means, it is reasonable to consider them nutritional in origin. Here is a list of those diseases associated with hypochlorhydria:
Allergies
Chronic fatigue
Autoimmune Diseases
Weak nails
Thyroid disorders
Dry skin
Diabetes mellitus
Poor night vision
Gallbladder disease
Hypoglycemia
Asthma
Weak Adrenals
Vitiligo
Rheumatic arthritis
Acne rosacea
Lupus erythematosis
Chronic hepatitis


Also: http://books.google.com/books?id=9Ob_njpRnnkC&pg=PA343&lpg=PA343&dq=insufficient+gastric+acid&source=web&ots=Uwh16GL5_h&sig=g0SjqkvHad1jKhxHnrOAH3DTVKs#PPA343,M1

[halsgluten]

Blood is salty. Sun is needed to make vitamin D, which does help the immun system somewhat, but the fungus in question live where the sun don't shine.

Diflucan is toxic to the liver. Two two-week courses of a (low) 100ml oral Diflucan and all my toenails are growing back, and my eyelids were no longer red (until the next time I mowed the yard after a dry dusty spell and got re-infected).

In Nystatin’s favor is that it can’t enter the body from the gut so it can be strongly dosed in the gut for a relatively long period. The idea is that the dysbiotic fungus is deeply ingrown in to the lining and takes a long course to wear it down. How was Nystatin administered in your case?
then I don't understand how it could cause his seizures or his liver disfunction unless it has broken out of the GI tract...
The toxins, metabolic byproducts and malabsorption caused by fungal dysbiosis contribute the seizures and to real or virtual liver dysfunction.
And when he gets sick, almost doesn't matter what type of bug it is, he's got a lingering nasty wet cough for weeks and weeks after the rest of the bug has long gone. ...
That was me until the gluten/casein free diet. I haven’t had a lung infection in the 5 years since I started GFCF, but if I ever do, I want to get it cultured for fungus.
So of course my fricken overactive imagination kicks into gear thinking -.. Yeah, someone said listening to me made her feel like a hypochondriac.
Where's the gallbladder? That's where acid is stored...how does it get there, does it need to travel through the intestine?
Bile is made in the liver and stored in the gallbladder and is alkaline, not acidic. The gallbladder’s duct is the next stop after the stomach. The gallbladder seems well placed to neutralize the stomach acid, but I’m just guessing at that.
The intestines absorb nutrients (as in protiens, lipids, minerals and vitamins) right? That's done via enzymes, right?
The small intestine absorbs most everything. The large intestine absorbs water and salts (neutralized minerals and organic acids).
Where are starches processed? In the stomach? No that can't be right.... Carbs & starches in the intestine???? All foods are processed all the way from the mouth to the large intestine. Breaking natural starches to sugars takes time, so sugars are absorbed all the way along the small intestine. Starches and sugars remaining at the end of the small intestine are normally broken down to organic acids in the large intestine by symbiotic bacteria (see above).
But whats the deal with fats??? They hang in the stomach for a long time... ???? They move along with everything else. Nothing is selectively left behind. That is why you need to eat a mix of everything, not one think overloading the system; that’s the real problem with anything refined, you eat big slugs of just one thing.

Hal

[halsgluten]

Sucrose / Glucose / Fructose / Lactose / Maltose / Galactose ...

...so why not just put them on the chart that way...why is there even a category for sucrose & lactose, ya know...

They are listed that way because Sucrose, Glucose, Fructose, Lactose, and Maltose naturally occur as free molecules (although maltose is usually a unhealthy synthesized food additive). Listing of Sucrose and lactose as such rather than as their constituent parts is necessary for those people who can't digest them. While Galactose is generally not found as a free molecule, it is listed for people who are galactosemic.

Listed that way, it is easy to extrapolate total glucose, fructose, and galactose content from the Sucrose, Lactose, and Maltose. But if only Glucose, Fructose, and Galactose were listed, it would be imposable to extrapolate Sucrose, Lactose, and Maltose (for people who are Sucrose or Lactose intollerant).

Hal

[RathyKay]

Yeah, someone said listening to me made her feel like a hypochondriac.
Errrrr... that would be me.:o But so much of what you write seems to fit Tom.
I wonder if a big part of the problem is 'weak' digestive juices...that would line up with seeing enzymes help...hmmmmm...I wonder how you could boulster gastric acid? I would think if the acid is strong enough it would 'digest' all those criters...they are only harmful alive, right? Well ignoring the 'die-off' for the moment...
I just know a tiny bit, but some of this can be influenced by the food you eat.
Type Os can efficiently digest and metabolize meats because they tend to have high stomach-acid content. This was an essential component in the survival of early Type Os. However, you must be careful to balance your meat proteins with the appropriate vegetables and fruits to avoid over-acidification, which can cause ulcers and irritation of the stomach lining.
So, I think in general, meats are more acidic and vegies more alkaline? The middle of this http://www.trans4mind.com/nutrition/pH.html has relative acid/alkaline comparisons of food, as well as a downloadable chart. I haven't read the rest of the site, so follow it at your own risk.

[Kristen (ColeysMom)]

KATHY!!!!! I think you just hit it!!!!!

Now, I'm just using a bit of deductive reasoning here (so there is a good chance I'm wrong)...but since carbs are easier to digest (breakdown) than protiens, I would suspect that the the higher acidity is actually a normal 'adjustment' made by the GI tract...

When Coley was being treated for GERD, I found a bunch of information that basically explained why longterm use of reflux meds don't work, and shouldn't be done...if you want me to post some I'll dig them up, just let me know, but here's why...

I can't recall all the technical terms, but in general reflux meds decrease the acidity of the gastic juices so that when reflux occurs (which is normal btw, and really shouldn't be 'shut-off') it won't burn the espoghus on the way up...but in turn what happens is that there is not enough acid to break down the food properly into small enough pieces so that the nutrients can be absorbed efficiently by the intestines...so there is a perfectly normal 'adjustment' that is made by the body to increase the acidity so that next time food WILL be broken down properly...

SOOOOO, what I think we can tease out of that comment about meat and acidity, is that meat requires more acid to breakdown, so the more meat you eat the higher your stomach acid will be!

And I don't know about you guys...I'm just guessing based on a few comments about picky eaters, along with our own experience here...I would be willing to bet that meat is a VERY low percentage of these kids diets! WHICH I read is a completely normal reaction to a biofilm as the biofilm itself decreases acidity (it's like a circular thing) so it would be normal to see a decreased interest in the exact things that are difficult to breakdown...I'm sure it results in discomfort!!!!!!!

BLAM!

Pack on the meat! Sneak it in girls!!!! Little by little to build up the acidity! Raw broccoli and beef every day some how some way!! LOL!

Pegs, what is zithromax? Is it an antibiotic or an antifungal or something esle???

And have you guys seen anything about boosting immunity to fight things like this...I know there is a shot that immune compromised kids can get to help them through bugs and such...but I wonder if somethng like that would work to fight a biofilm infection???? I keep thinking about the 'good guys' tangled up in that biofil...should we necessarily want to bomb the entire community or just selectively commit germ-acide?

[RathyKay]

Tom *was* definitely not a meat-eater. But, once we removed gluten from his diet (he was already dairy-free), he began eating meat again. Now I have to work to get him to eat something besides meat.:rolleyes: (And Hal had another post where he talked about too much protein. I tell ya, everything he writes seems to fit Tom.) Kind of going along with that, this is from wikipedia:
Zinc deficiency causes a decrease in appetite -- which could degenerate in anorexia nervosa (AN). Appetite disorders, in turn, cause malnutrition and, notably, inadequate zinc nutriture.
Basically, zinc deficiency leads to loss of appetite, which leads to malnutrition and further zinc deficiency. And meat is a good source of zinc.

I haven't done too much reading on GERD / stomach acid. I just have that vague... they try to reduce the stomach acid in infants / toddlers, and yet low stomach acid is considered to be a bad thing in older adults? Something isn't right with that logic...

Zithromax is an antibiotic. (Is it a broad-spectrum one?) Kill the strep.

Kristen, have you looked into a low-oxalate diet? I was just following some links on the GS/CD forum, and it kind of seemed to fit what Coley can safely eat. Not that I'm recommending it (because I don't know enough), but it seemed a close match. It does make you wonder how much of these diets are just a result of whatever intestinal flora you have. Too much of this bacteria, and you do better on this diet. Too much of this yeast, and you do better on that diet. One of the articles I was reading was talking about some of these kids needing to be on anti-fungals for *years.* I'm starting to wonder if that's Tom.:(

[Kristen (ColeysMom)]

I gotta tell you, the more I read, the more I think I passed this to Coley...

I know I talked about this in a couple threads, but to elaborate a bit...when I was a baby I was very sickly, and small...I was a little early but not much...in all the pictures of me I look terrible...you can tell my kidneys were NOT functioning properly! Dad & Mom talk about how I cried terribly for the first 2 years of my life. My brother is only 11 months younger than me so at a certain point my mom had to pass me off to my aunt so that she cold get some rest, being preggers and all...

Once while just a baby I dehydrated myself for no apparent reason, I suspect my kidneys were shutting down, and I came VERY close to being admitted to the PICU because of it...at that time our pediatrician did house calls and managed to get me to drink REAL gingerale, that actually contained ginger...apparently this got me over the dehydration hump, but did not resolve my issues.

It was later discovered that I had sinusitis and ear infections...I remember having to apply ointments to my ears, so this went on well past toddlerhood. Meantime the UTI and kidney infections were discovered, that part of the story is vague to me, but I do remember getting hauled down to the hospital pretty often for x-rays to veiw the development/regression of the infection. I almost had to repeat 1st grade because I missed so much school...so this persisted pretty badly between infancy and age 6.

Growing up I could predict the weather by the pain in my eyes, my hearing was poor so my grades suffered as did my social interactions...and I still made frequent trips to the Drs for antibiotics when I could 'sense' the oncoming recurrent kidney/uti infection...I went so often that I could do it independently at a young age and still remember my family's BC/BS policy number as though it was my phone number or address...it was that important to me!

But the bottom line is here, that I was on so many rounds of antibiotics, I am faily sure that this is what has caused some of the 'other' stuff I mentioned in an earlier post here...

But the thing that hit me just a few minutes ago is my memory of eating as a child...now mind you mom was the 'finish everything on your plate' type...and god we hated it when Mom was hungry and she fixed our plates...but never the less, I could NOT stomach bread of anykind (hot dogs rolls, sliced, dinner rolls, muffins, etc)...and we didn't eat yukky-no-nutrition bread either, only real harty bread...but as that bread approached my mouth I would literally gag at the smell of the yeast...and it ws no more yeasty than any other bread (well with the exception of course of yeast-free bread)...but the other REALLY vivid memory I have of eating as a child was my inability to eat meat...I detested it! Not so much the taste...although there was something ablout stewed meat I DID hate...but steak and pork in general would make me feel like I was trying to digest a brick...I would get the WORST stomach cramps from that! And I really didn't enjoy milk either...it always tasted like warm milk to me...like the way it does when it's gotten a little old, not bad, but just hanging around too long...that made me retch...and I know it wasn't always 'old' and it wasn't the brand or anything...because my 'taste' for it changed as I grew up...I never have been a big milk drinker, but it doesn't taste the way it did back then, ya know???? I love cheese though, and my skin tells me CLEARLY when I've gotten too much dairy!

Anyhoo...I don't really know how I could figure it out, but I really think at this point that whatever biofilm Coley has (if in fact he does have it) could very well have been passed to him...at least it seems pretty possible, if not during pregnancy, then I would guess during delivery it could have also occured...

I did look into the oxalate stuff, but I was troubled by the veggies part...as it says that the few veggies that he does tolerate are high in oxalates, or are higher oxalate producing, not really sure how that all works out...

BTW - Coley is doing AWESOME with the broccoli since getting the s.boulardii...I made chicken soup last week with escarole too without any issues...plus his appetite has REALLY picked up!

The GI checked his vitamins & minerals and only came back with low D...wasn't even that bad, he just wanted it to be higher, so we've added more since getting that call...

That vitamin D...sunshine...pond scum...thing is making my head hurt too...seems like there is something to it...research for another day I guess....

[peglem]

I believe babies are born w/no intestinal flora. What you nay have passed to him is a yeast infection (though I'm not sure how possible that is). You can pass stuff through your breast milk however. Can breast milk get yeastie? I dunno.

[Kristen (ColeysMom)]

Well you can certainly get a yeast infection on your breasts...hmmmm

[Kristen (ColeysMom)]

This is VERY interesting...too many points to quote:

http://www.diva-portal.org/diva/getDocument?urn_nbn_se_su_diva-7152-2__fulltext.pdf

It discusses the development of gut flora in infants, and does touch on colonization via the mom...and iludes to the fact that a better colonization is done VD versus CD. SO I would interpret that to also mean that if there is bad stuff present in the birth conal that that also gets passed....

It discussed allergies and the development of celiacs and colits...very interesting!

[Kristen (ColeysMom)]

Ok, I know none of us need any more guilt or anything, but HELLLLLLOOOOO!!!!

The prevalence and complications of bacterial vaginosis are population dependent. In pregnancy, bacterial vaginosis is associated with late miscarriages and infection driven pre-term delivery. Regardless of the aetiology of pre-term delivery, surviving infants are at increased risk of subsequent neurodevelopmental handicap.

Uhmmmmmmmm, am I missing something? Doesn't this imply that some, microorganism any microorganism may be at the root here?????

http://www.level1diet.com/research/id/471342

I havent' read the full text, but will later...

[Kristen (ColeysMom)]

Ok, and now I just want to go puke my brains out!

Bacterial vaginosis (BV) is the most common cause of vaginal infection (vaginitis (http://en.wikipedia.org/wiki/Vaginitis)). For grammatical reasons, some people prefer to call it vaginal bacteriosis. It is not generally considered to be a sexually transmitted infection (http://en.wikipedia.org/wiki/Sexually_transmitted_infection)[1] (http://en.wikipedia.org/wiki/Bacterial_vaginosis#_note-GCH2002) (see causes below). BV is caused by an imbalance of naturally occurring bacterial flora, and should not be confused with yeast infection (http://en.wikipedia.org/wiki/Yeast_infection) (candidiasis (http://en.wikipedia.org/wiki/Candidiasis)), or infection with Trichomonas vaginalis (http://en.wikipedia.org/wiki/Trichomonas_vaginalis) (trichomoniasis (http://en.wikipedia.org/wiki/Trichomoniasis)) which are not caused by bacteria (http://en.wikipedia.org/wiki/Bacteria).

The most common symptom of BV is an abnormal vaginal discharge (http://en.wikipedia.org/wiki/Vaginal_discharge) (especially after sex) with an unpleasant fishy smell. There is rarely itching. Nearly half of all women (http://en.wikipedia.org/wiki/Woman) with BV don't notice any symptoms. By contrast, a 'normal' discharge will be odourless and will vary in consistency (http://en.wikipedia.org/wiki/Consistency) and amount with the menstrual cycle (http://en.wikipedia.org/wiki/Menstrual_cycle) - a normal discharge is at its clearest about 2 weeks before the period (http://en.wikipedia.org/wiki/Menstruation) starts.


A healthy vagina normally contains many microorganisms (http://en.wikipedia.org/wiki/Microorganisms), some of the common ones are Lactobacillus crispatus and Lactobacillus jensenii. Lactobacillus, particularly hydrogen peroxide-producing species, appears to help prevent other vaginal microorganisms from multiplying to a level where they cause symptoms. (Note: Lactobacillus acidophilus (http://en.wikipedia.org/wiki/Lactobacillus_acidophilus) is not one of the species of Lactobacillus identified as playing a protective role in vaginal flora.) The microorganisms involved in BV are very diverse, but include Gardnerella vaginalis (http://en.wikipedia.org/wiki/Gardnerella_vaginalis), Mobiluncus (http://en.wikipedia.org/wiki/Mobiluncus), Bacteroides (http://en.wikipedia.org/wiki/Bacteroides), and Mycoplasma (http://en.wikipedia.org/wiki/Mycoplasma). A change in normal bacterial flora including the reduction of lactobacillus, which may be due to the use of antibiotics or pH imbalance, allows more resistant bacteria to gain a foothold and multiply. In turn these produce toxins which affect the body's natural defenses and make re-colonization of healthy bacteria more difficult.


Although previously considered a mere nuisance infection, untreated bacterial vaginosis may cause serious complications, such as increased succeptibility to sexually transmitted infections including HIV, and may present other complications for pregnant women

more here: http://en.wikipedia.org/wiki/Bacterial_vaginosis

When I was in college and they tried to isolate the 'problem' which I can now see would have been diagnosed as BV, OY! the only thing they could tell me is that my PH was off and not to worry!

If you need me you can find me puking my f'n brains out!

[Isabelle]

where is mili to remind me the cure of any vaginal infection, i think it was, with yogurt, lactobacillus acidophilus ???? holding it for as long as you can....
another use of these friendly bacteria LA was for the surgeon to cover his/her hands and arms with yogurt before operating on you.

[RathyKay]

Kristen, I just wanted to send you some (((hugs))). I didn't read the links you posted, but I have some vague memories of reading something that part of a newborn's intestinal flora is a result of whatever is in the breastmilk. (Then there's the germs on the toys they suck on, etc.) If you don't have a lot of good bacteria and whatnot, your child will not have a lot either. (Can't pass on what you don't have.) Be that what it may, I think you're being a bit hard on yourself. You didn't smoke 10 packs of cigarettes a day while pregnant. You didn't drink yourself into a stupor everynight. You didn't do drugs. (At least, I'm pretty sure you didn't.:o) Whether you did pass it on to Coley or not, you didn't do it intentionally. Don't look at this as something to feel guilty about. Look at this as a sign pointing you in the direction of help for Coley.

Also, is this what they test for at delivery? I know they did some kind of bacterial check right before each of my kids was born so that they could treat them if needed. (So, you should have been checked and this shouldn't have been a problem.)

Regardless, don't beat yourself up over this. You don't deserve it. (((Hugs)))

[Kristen (ColeysMom)]

No this isn't what they test for...I'd have to relook that up, but I had the same thought...

UGH!

But because my water did break prematurely with Coley (SROM or PROM, which is yet another symptom of this)...I was on antibiotics to prevent amniotic infection while they held off labor long enough to administer steroids to develop his lungs.

Of course we are talking about bad bacteria here, one that is generally kept at bay with good (the usual scenario) and dosing me with antibiotics for only hours likely didn't do much!

The link in post #75 (holy cripe) discusses how the initial population of infant gut flora is done as it passes through the birth canal. It's VERY interesting, because it talks about the higher rate of asthma & allergy in cesarean deliveries vs vaginal...but also points out that longer births are also better...Coley popped out in 1 push...he flew out really, the Dr had to catch him...and more than that I had to hold him in while THEY got ready...OMG! Do you know how hard that is to do....

Anyhoo...I know I didn't do it on purpose, but it just makes me nausious anyway...and I know, really I do, that this does put us in a unique place to have some good information to move forward...but crikie!

You guys should really look at those links...

I gotta call my OB I think...and his GI without going off the deep end...

I guess my OB first, ugh!

And what about Audrey???? Should I start giving her probiotics?? I'm not really looking for an answer, just thinking out loud...

[peglem]

I think the test is for strepB (not the sore throat kind) and it can cause a lot of problems for the baby if they get it from the birth canal.

[Kristen (ColeysMom)]

Ok, I've been reeling over this, googling and reading...sorry I didn't save any links, but this is where I'm at with this now...

Ok, apparently what normally keeps the vaginal flora in check is l.acidopholis which is naturally present there, and somehow that gets knocked out of balance...once the scales start to tip, you know the drill...

There are a couple things that they think cause the tipping...poor hygene (ie. bad wiping practices), antibiotic use, yeast overgrowth AND treatment for it, douching, etc...

I did also read a few sites that mentioned poor immunity, implicating things like diabetes, thyroid issues and stress too.

Anyway, there are a couple bacteria that flourish with BV...which are generally present there, but in not so high numbers...these are also present in poops. Which tells you that they are also there in the digestive tract (Gardnerella, Mobiluncus, Bacteroides, and Mycoplasma). But interestingly though there is a strain of strep that I found mentioned in a couple articles too...

The long and the short of it is that I could NOT find anything that further described the "neurodevelopment handicap" that was mentioned in that other link.

The only thing I remotely found was that it IS a leading cause of premature birth, which unto itself puts a child at great risk for neurodevelopmental handicap.

AND...

That Kirkman labs has isolated several bacterial strains in the guts of children with Autism for which, (much to my HUGE surprise) cranberry extract was successfully being used to beat down...some of which were common strains that are found in BV, but there were others too.

Also, there doesn't seem to be an antibiotic regimine sufficient to attack the combination of overgrowth in BV, that the most promising approach has been probiotics, specifically L.Acidopholis...(you may already know this, but it was new to me) because it produces a peroxide type toxin that manages to keep the other bacterias in check.

SO....back to the tride & true for me, cranberry juice & yogurt...gotta love Mom at times like this, huh!

And good too, because cranberry is VERY low in fructose and I was already considering attempting to add it into Coley's diet, just because it's LOADED with antioxidants! I was thinking of making cranberry shortbread cookies for T-day!

UGH! So this is what I will do, I'll keep you posted, and hopefully my over-active worrying nature allows me to zip it at our appointment with the GI...unless something makes me think it's important to raise...but at this moment I'm thinking not.

Also, some of what I read, I may have posted a good link that mentions this, but that apparently BV is VERY common, like 50% of women get it...and often there are no symptoms. As I suspected, the most logical scenario for me is the antibiotic use, followed by the inevideble yeast infection and it's treatment...

Let me know if there is anything here that you want more info on...if I regoogle anything I should be able to easily find the studies & such that I read before google refreshes.

Sorry for the HUGE tangent...hopefully there was something in here that actually added some value to this conversation!

What I think I took away from it was that just knocking flora out of balance can lead to not only infection and inflamation but worse in the presence of compromised immunity: deseases and cancers...

I would think that this notion would be easily transferable to the digestive tract...which I don't think is a giant leap within this discussion, but I do think it gives MORE credence to the idea that maintaining proper digestive flora goes a LONG way toward managing ones overall health...particularly in a developing body!

[peglem]

Hmmm...years ago I had a friend whose obgyn told her when she thinks she's getting a yeast infection to insert some plain yugurt "up there" and it would take care of it. I've never, but she said it worked.

[Kristen (ColeysMom)]

That sounds right! I've heard that before too..but eating it works well too, just not as fast, so depending on your level of discomfort....

[Kristen (ColeysMom)]

Oh....I started a thought and then got side tracked...the commonality of it, and the fact that this is the initial means to gut flora population in newborns...I would think that the out of balance flora would be unfavorable... perhaps what leads to eating dificulties or something...

[Kristen (ColeysMom)]

I thought you may be interested in this one:

http://www.talkaboutcuringautism.org/medical/kirkman-book.pdf

The stuff about cranberry extract is on pg 93:


GASTROINTESTINAL DISORDERS: The role of cranberry concentrate has been suggested to serve as a digestive aid in part because of the high acidity. The active ingredients in cranberry can help in the digestion of fatty foods. There are reports that proanthocyanidins help to relieve diarrheal symptoms, although there is need for additional studies in this area. The proposed function is thought to result from the anti-bacterial activity in conjunction with is action as an astringent (any acidic substance that draws together and constricts tissue). It has been proposed that the proanthocyanidins cause the proteins to clump together to form rigid cakes, which prevents bacteria from using the proteins for food.1......

Antibacterial Activity: The effectiveness of a cranberry extract should also include inhibitory activity against a full range of bacteria not just E. coli.17 Specific laboratory testing has been undertaken on the Super Cranberry Extract which Kirkman uses
showing complete inhibition of the growth of the following bacteria:

E. coli
Staphylococcus aureus
Bacillus subtilis
Yersinia enterocolitica
Serratia marcescens
Salmonella typhimurium
Pseudomonas aeruginosa
Gardnerella vaginalis
Pseudomonas fluorescens

Antioxidant Activities: The high polyphenol content of cranberry contributes to its antioxidant activity. Laboratory studies of Super Cranberry extract show it has very high levels of polyphenols. Testing was performed according to the AOAC Official
Method 952.03 (Data and Methods available from Microbial and Analytical Labs of Cliffstar Corporation, Dunkirk, N.J.) Results specifically comparing Kirkman’s cranberry extract with a leading brand showed that our formulation had 10 times more
polyphenols.

[RathyKay]

Sorry for the HUGE tangent...hopefully there was something in here that actually added some value to this conversation!
I guess I don't see this as being off tangent for this thread. It's interesting, and I think I'll look into cranberry extract. (Although, I still think yeast is Tom's problem, not bacteria.)

[halsgluten]

You can simply contract yeast by breathing fresh air; I think if you passed anything on, it was most likely genes.

Hal

I believe babies are born w/no intestinal flora. What you nay have passed to him is a yeast infection (though I'm not sure how possible that is). You can pass stuff through your breast milk however. Can breast milk get yeastie? I dunno.

[Kristen (ColeysMom)]

Hi guys, I just wanted to give you a quick update after our appointment with the GI...

First off Coley's been WAY aggressive on the s.boulardii, but his appetite has been so good! He gained 2 pounds in 6 weeks!

His behavior didn't start out that way though, it has progressed to that. So we have been advised to reduce it down to 1 capsule per day and increase slowly 'til we hit the breakpoint. Today will be our 3rd day at 1, and it really doesn't seem to be touching his appetite, but his behavior is MUCH more normal...what a trade off! http://www.mfipb.com/html/emoticons/sad.gif

We discussed the phenol intolerance and he will be looking into it further before advising us on it, particularly the use of the enzymes.

His test results were largely normal, just a couple out of range, one of which was a stupid liver enzyme that's been irking me forever! Well, Dr. Y explained to me that the value fluctuates throughout the day and to see any given test show just outside of the range does not send up any red flags. He would need to see it WAY outside, so that puts my mind at rest about that!

So, now I'm feeling MORE hopeful that we are not really looking at a metabolic issue here...because all his 'other' reactions to food can be explained by digestive deficiencies, including the seizures (from poor nutrition/nutrients).

That doesn't say that we've gotten anywhere exactly, but it does encourage me that there is a way to get him to normal!

I'm inclined at this point to 'try' the enzymes just as a reason to be brave enough to challange him again. I want to, but I'm terrified to! Last time we challenged him he regressed so bad that school decided not to let him break for summer...:eek:

Plus I need to bring things into the house for Audrey's eating skill development, but I just don't know how to do that without sharing it with Coley...there are only so many hiding places, plus he sees her eat! He's already gobbling down the 'O' cereal, which he's tolerating ok, but somehow he doesn't get that Audrey can have things that he can't...:confused:

Also, we talked a little about IgG and digestive flora and DAN! protocol, etc. I like him a lot, he seems to have a very common sensical approach to things...

While discussing the whole phenol intolerance idea he was quick to point out that too much enzyme is bad too...sometimes it helps, like the s.boulardii, which says something...but to look at lab results doesn't say much because the 'data' on normalcy/efficiency or deficiency doesn't exist...

Basically if you find that there is yeast or bacteria or whatever in stool or something...we just don't have the research to know whether that is correct, whether it is too much or whether it is not enough...and it obviously gets more complicated than that when you look at the diversity within too...

He had the same perspective when it came to IgG readings...he said everyone will produce IgG for things, but that does not say that those things are bad...it simply means that the body is doing what it needs to...but it is recognized that IgG IS produced for some things that ARE intolerable to a body...but they just don't have the data to know if IgG is a good measure or tool for recognizing an intolerance (versus an allergy) and if so, what the 'breakpoint' is.

So as far as DAN! goes, he feels that they are misleading people into thinking that they understand something more. He has seen good things from the use of probiotics and enzymes too...but was quick to point out that many people would benefit from it as well, and benefits from it's use really doesn't say more than that.

And it's important to bare in mind that a child's sytem reacts more sensatively to things...

At this point he is inclined to consider an enzyme for Coley, but wants to look into which one may make more sense...he said his general approach when considering enzymes is to go with a 'complete' version, but since we've been able to narrow his problems down to specific foods it may make more sense to use one for carbohydrates or perhaps the phenol...he will get back to us on that once he's had a chance to look into it all further.

He ran some more blood work, not nearly as much as last time...but did rerun a few food allergy tests (since they failed last time) and one to check for Salicylate allergy.

So that's that...I'll let you know what, if anything comes from the labs, and of course what he decides on the enzymes...and oh yeah, how things go with the s.boulardii...

[RathyKay]

That was a quick update?:p Sounds like it was productive. I guess my only quibble is on this:
So as far as DAN! goes, he feels that they are misleading people into thinking that they understand something more. He has seen good things from the use of probiotics and enzymes too...but was quick to point out that many people would benefit from it as well, and benefits from it's use really doesn't say more than that.
I'm not so sure they're misleading people. It's more of a "this is slightly outside of normal (or grossly outside), let's try to correct it and see what happens" approach, versus "oh, autistic kids have diarrhea. Live with it." And I have no problem with other people benefiting from probiotics and enzymes. Let's help everyone feel better!

Off-topic sort of... Kristen, I want to recommend "Good Calories Bad Calories" by Taube to you. I have a long-winded bit here (http://brain.hastypastry.net/forums/showthread.php?t=11627&page=2 post #18). I was in the middle of reading about insulin and bloodsugar when I had to turn it back in to the library. I thought of you. There's just a lot to absorb in this book... not light reading.

[Kristen (ColeysMom)]

Hmmm, let me see if I can explain what he meant better...

He wasn't saying that there is no 'data' that defines:

- what microbes SHOULD be present.
- what microbes SHOULDN'T be present
- what amounts are tolerable
- what amounts are necessary
- what amounts are dangerous
- what types should be irradicated
- what types can be managed by a healthy gut w/o intervention
- what combinations are preferable

-etc, etc.

So testing outputs may say what is present and may even suggest what types are flourishing...there really is no 'data' to base any sort of 'intervention' ...whether one is warrented or not and then how to do that...

It's this part that he feels DAN! is misleading people.

However, with that said, he did say that he has used them, but finds that often they are overused...did you see Hals post within the 'bad behavior thread'...this is what he was iluding too...

So, he prescribes them carefully, BUT also acknowledged that even if we see improvements with Coley, it doesn't necessarily mean that we are approaching the 'root' cus they help lots of people, even those that don't have behavioral/developmental responses to food.

Basically, he was saying that perhaps we can help Coley manage his reactions to foods for the moment, but that doesn't mean we stop looking for the source. Same goes for other people...their systems could simply be out of whack from some insult (sickness, surgery, antibiotics, etc)...but something that is more than that, like with our kids, likely will not be solved with enzymes.

Does that make more sense?

I'll check your link in a bit, DH just got home...need to whip into happy homemaker mode...

[RathyKay]

I guess I was thinking beyond gut flora. I was thinking of vitamins and minerals and whatnot, where there is more data available. Although, being in the middle of "Good Calories Bad Calories" maybe there isn't data available and I'm just assuming the US RDA is based on something more than a committee's random number generator?:confused:

[peglem]

I was informed at a class for biomedical interventions that the RDA is based on the minimum required to avoid illness (from lack of whichever vit./min) It is not based on optimum health. But, have the studies been done to set a baseline "normal" range for vit/min levels in the system? I don't think so...well maybe some. But wouldn't it be hard to tell- blood levels don't necessarily reflect tissue levels?

[Kristen (ColeysMom)]

Ya, he wasn't making any sorts of general judgements on DAN!, just speaking about the use of enzymes.

I don't know what his opinion of DAN! is in general...I would guess he has some level of respect for them as he focuses on GI issues with ASD kids too...and for a mainstream doc he and Dr Buie, I think, are more open minded...but we really didn't talk about that at all...mostly he was just trying to explain his rationale behind prescribing the enzymes verus DAN!s approach.

One thing I have learned with all that we've encountered with Coley's diet & all...

"Healthy" is all relative. And those RDAs are really only based on 'normal' or what FDA considers normal.

In many cases the food pyramid and the recommendation of vitamins is NOT healthy for an individual. It all has to do with the specifics of a persons make-up.

Imagine us in the metabolic Drs office trying to make sense of the fact that if we remove all fruit, all vegetables, and all whole grains from his diet...which is a growing body...that according to the Dr, the only deficiency that he will have is in vitamin C. A fact that has been confirmed over & over again by other FIers.

But that doesn't even discuss any other functional issues that he may have with synthesizing vitamins...

This may be an extreme example, but you can see how the medical community is not even in sinc with that.

We were also sent to a metabolic dietician, who couldn't even get past the pyramid...kept wanting us to add veggies & fruit & fiber into his diet...although it could cause him seizures...

Just made me wonder where the information comes from, how it's taught & all that... Clearly the dietician could not understand how Coley's body uses food differently than others...or how unhealthy the pyramid is to him.

Where's the real truth, ya know???

[RathyKay]

Tracy Sheppard posted this link (http://overcomingcandida.com/autism_ph.htm) in response to a masking question. I thought it was interesting! (Of course, I'm kind of strange that way.)

About masking... if you haven't heard of it, some of the cerebral palsy parents do it to their children to build up their lungs. Pneumonia and just a plain cold are awful on some of these kids lungs because they can't clear all the mucus. It can quickly become a life-threatening situation. Masking is a way to strengthen the lungs when you have little bodily control. There is an autonomous system (I *think* that's the term) whereby if the oxygen in your body gets low, the brain will automatically trigger deeper breathing to try and suck in more oxygen from the surrounding air. I worked Civil Service for the Air Force many years ago and I took a "chamber ride" which is a pressurized chamber. They cut off the flow of oxygen to the chamber (there were supervisors with oxygen masks to ensure nothing happened) so that we would have some idea what our personal symptoms are when oxygen gets low. (The idea is to hopefully recognize these later should you be flying and lose oxygen without realizing it, and be able to put on an oxygen mask before you blackout.) The first thing I realized after they cut off the oxygen was that my breathing was a lot deeper. At the time, I thought it was because I was panicking a little.:o Now I know it's part of the body's preservation. Anyway, the above link refers to masking as using a "rebreather mask."

THe link also talks about pH levels, specifically where blood levels are acidic and urine levels are alkaline, which they say seems to happen a lot in autistic kids. (I'm tempted to go buy some pH strips.)
The acid/alkaline balance is one of the most overlooked aspects of health, though Gary Null and others have written much about it. In general, the American public is heavily acid, excepting vegetarians. A too-acid system speeds enzyme activity. Children with autism often are heavily alkaline. A too-alkaline system slows enzymes to a crawl.
<snip>
With proper functioning, vessels dilate and you start perfusing your brain and tissues, bringing out the toxins and bringing in the nutrients. Raising oxygen levels will also help kill off yeast and other pathogens. Lack of oxygen allows them to multiply.
Anyway, I'm not really sure I'm interested in masking, but I found this fascinating, just because it seems to combine several different things I've read in a new way. If this interests you at all and you want to do some more reading on it... the IAHP (http://www.iahp.org/) is the Institutes for the Achievement of Human Potential and was founded by Glenn Doman, who wrote (among other things) What To Do About Your Brain-injured Child: Or Your Brain-damaged, Mentally Retarded, Mentally Deficient, Cerebral-Palsied, Epileptic, Autistic, Athetoid, Hyperactive, Attention Deficit Disorder. (Yes, I read it.)

[Kristen (ColeysMom)]

Just a little update girls...

I'm getting confused now about where to post, here or on the biomed post...anyhoo we got the enzymes yesterday and began last night...

Did I post information about them somewhere?????

Anyway, what I've been able to dig up about the phenol intolerance has me pretty encouraged. On one hand it could explain a lot more than what the fructose intolerance explains, like his horrible reactions to antibiotics, OTC meds (tylenol & motrin), antihistamines, anesthesia, etc. His reactions to additives and preservatives AND his reactions to fruits & veggies. PLUS there is some evidence that suggests that the hormones (natural & artificial) in dairy could also trigger a reaction. So this is the first time that we could actually capture all of Coley's symptoms under one idea...so it's encouraging.

But another thing that I came across is that there is controversy about where the intolerance comes from...as people with it tend to have overgrowth as well. Does the overgrowth create the intolerance or vise versa????

It almost doesn't matter, because the enzymes also work at breaking down micro-organism cell walls, in the same way that it does for plant foods.

There are also some suggestions that 'cleaning-up' the system restores the body's ability to process the phenols more effectively...that is if it 's the overgrowth setting up the intolerance.

So, I'm REALLY excited to try this...I'm hoping that it gets us on a normal diet...it would be SO nice to have fruits & veggies in the house again!

So, last night I made chicken, broccoli (which he was doing ok with lately anyway) and spanish rice (tomatoe is a BIG no-no)...I gave him his enzymes before we ate and explained to him why we needed to take them. He asked me to mix it into chocolate milk, then he whacked it back...he REALLY wants his veggies back!

His coloring looked awesome last night...he had a great healthy glow to him, which is NOT what generally happens after exposure....he gets this pale/grey look with purplish circles around his eyes.

Then, get this, after dinner DH was doing the PJ routine with him...I was down stairs cleaning up and I hear a lot of really disturbing yelling and screaming and it's going on & on...I go up to investigate. Coley is whaling, his face is all red and he has a DH sized palm-print on his right buttock... The 2 of them stop short and just look at me:

Me::mad: "What is going on?"

Coley: "Daddy is not being nice!"

DH: "Coley is not following directions!"

for one minute I thought I was talking to 2 kids....:rolleyes:

Me: "Is that true Coley?"

Coley: "No, DADDY was not following MY directions!"

Me: "Ok, what exactly happened?"

DH: "He was kicking me and refused to put his PJs on, just kept yelling that he wanted to do it, but then wouldn't"

me - (in my head) ahhhhhhhh, my morning routine! How'd that feel Daddy! not that it's his fault but there's no better way to understanding than experiencing it first hand, huh!

Me: "Coley!?"

Coley: "I want to do it myself!"

Me: "Ok, go ahead" and he does...he got a little hung up with the second sleeve of his feety-pjs and did that spinning around technique. I offered to help but he said "I DON'T NEED HELP!"

And all was pretty ok after that...he DID try to push the limits, didn't want to go to bed, wanted one more snack, etc. After a bunch of sorries & a group hug, he went to bed.

So, for the most part we just moved the horror of the s.boulardii mornings to the evening!

So what the heck does that say???? I was kinda thinking that it was the live organism that was causing the problem...I don't think we can say that now, cuz there are none in the enzymes.

Do you think there's something in there that doesn't wanna be evicted????

Well, time will tell I guess...it was only the first one...but YIKES it impacted him quick!

Thoughts???

[RathyKay]

It does sound positive that you think "phenol intolerance" covers most (all?) of Coley's symptoms. (Right diagnosis, right treatment). And, I wouldn't be surprised if he had some kind of overgrowth going on, so maybe with proper treatment (whatever that means) you could get him safely eating a wider variety of foods.

I've heard many people say when they've started an elimination diet, or gone GF, or DF, that they felt worse and worse until about the fourth day, when suddenly the sun came out and the world was a much better place. On the other hand, if there is die-off, it can take weeks (and even months) to get everything squared away.

So... I hope this is a positive. But, I really don't know.

One other thought... did you make Spanish rice with tomato? I would try the enzymes without making any changes to his current diet. Let the enzymes "chew on the cell walls" instead of working on the food. See if you can get the overgrowth under control (if there is overgrowth). Then try increasing your variety of foods. Some of the enzymes Tom was on were to help with accidental gluten and/or dairy ingestion. We weren't using them so he could eat the foods; just in case he accidentally got some.

I meant to post on your other thread... I was wondering a little about Coley just wanting more one-on-one attention from you (or DH). A baby changes things. I remember Samantha throwing toys at me for a month or so after Claire came home from the hospital. It took awhile for Samantha to understand that if she woke the baby, I'd have to go get her, and then Samantha would have to share me. Do you remember that McDonald's commercial, "I had blue eyes first." You just need to find an extra couple of hours a day to spend with Coley.;) Ask Santa for 30-hour days for Christmas.:p I think I've reached my rambling point.:o Hope some of this makes sense.

[Kristen (ColeysMom)]

I do think that part of his behavior is provoked by jealousy, but not all. I mean he's generally very good with her, and very good about being able to tell me when he's feeling left out...so something goes awry someplace that derails his patience and ability to communicate his feelings. Having said that I need to remind myself that we ARE talking about an almost 5yo...which I realize must sound rediculous when I talk about him like this...but I swear to you he's like a little 30 year old most of the time. So sometimes I have to wonder if his more age appropriate/typical behavior is really a good thing, ya know??? Even though his behavior is harder to manage (as it should be)???

Anyhoo...I just wanted to give another quick update. I'm finding this all so interesting, I hope you guys aren't totally bored with it...

So his behavior has been less volatile since his first day...his mood is SO much more even and pleasant. It's nice! He's playful and full of ideas. BUT, he's got nothing for an appetite AND his focus is horendous. He's ALL over the map, and has this foolish smirk on his face CONSTANTLY when I'm asking him repeatidly to do something simple.

I get a little aggrevated when he's like this, but can tell that he's not misbehaving that there is somethng more to it, so have all the patience in the world for it, so my actions/tone for the most part don't elivate. I can't tell if he is aware or not of how scattered he's being...often he is aware if it and gets frustrated...but not the last few days...

I still haven't been able to figure out if his lack of appetite is contributing to his lack of focus or if his lack of focus is preventing his eating...I'm sure that it could also be a catch 22 type thing...but those 2 things seem to go hand in hand!

Also, (TMI warning!) his toileting/urine/BO smell...it's a curious thing...while on the s.boulardii he it seemed that he was doing great going, and we even had a couple days of no smells...it seemed like the smells were sorta wavering, but dwindling at the same time.

Now, he's having one accident after another...he keeps telling me that he thought he was ok but then it came too fast. I'm actually wondering about a UTI by the way he's talking about it, but I'll wait a bit on that. AND the smell is back!

Plus the weird rash on his bum...which not sure I mentioned before comes & goes and I just CAN'T figure out what triggers it! He's been complaining that it's really bothering him too. Generally a good soak in epsom salt clears it up quickly. And OH...last night I pulled a giant chunk of molases looking wax out of his ear...did I tell you guys about his ear wax before??? Well that whole thing virtually disappeared on the s.boulardii...

It's all so picular, isn't it?

Could it be that the enzymes are clearing stuff out??????? Well, it's only been a couple days so I don't want to make any changes based on his 'getting used to it' or whatever...but hopefully things start to get better on some of these other fronts or I'm going to have to conclude that the enzymes are aggrevating something...that would be weird huh!

Anyhoo...rambling now, just wanted to boune this off you guys....

[peglem]

So, have you stopped the boulardii? Also, read somewhere that appetite can be linked to acetylcholine levels. Look at Coley's pupils, if they are large most of the time, that's a sign of low acetylcholine. Several years ago I got Allie on Bethanecol. The improvements were swift and immediate, but after awhile it seemed to lose effectiveness. I'm thinking of trying it again, but need to check first if there might be a problem with using it w/ lamictal. Its a tough check since bethanecol use is not very common and little is known about how lamictal actually works.

[Kristen (ColeysMom)]

Ya, the doc said that the enzymes are redundant so to stop the s.boulardii.

That's interesting about the pupils...yup they are often really wide...I've been told this is a sign of irratic brainwave activity (by the neuro) and also that it is a sign of BS swings (by the metabolic specialist)...I'm sure it could be a dozen other things too :rolleyes: ...but I have notice that since restriction that they are frequently more normally dialated, but we still do see them staying wide when they shouldn't be sometimes.

hmmmmmm.

[RathyKay]

And now, I'm going to have to pay attention to Tom's pupils.:rolleyes: (I think they lean toward the dilated side, but maybe it's because I only notice them inside the house?)

I'm not sure what to tell you about the ear wax and rash stuff. I think it could be a positive sign, or it could be a negative sign. Is it a sign that the body is ridding itself of toxins (overgrowth byproducts, overgrowth carcasses), or is it a sign of an allergic reaction to the enzymes? I don't know. At this point, Tom's ear wax seems to increase with yeast overgrowth. And, he's never had it as bad as you are describing.

One other thing on that "feeling great on Day 4" that I mentioned in my previous post on this thread... when we went dairy-free, Tom had dairy withdrawal seizures at about the two week mark. So... sometimes this takes longer than 4 days.

On the jealousy bit... I have two SILs with daughters from previous marriages. In both cases, there is a 10 yr difference between my older niece and her younger sister in the same family. When the younger sisters were babies, my Mom commented each time on the jealousy from the older sisters. Not that they were bad, just that the jealousy was there and evident, even though these were 10 year old girls, fully aware that babies need lots of attention. Anyway, it's normal for Coley to have some jealousy, even if the way he expresses it drives you up the wall.;)

[Kristen (ColeysMom)]

Ok, so the enzymes seem to be working fine. We've allowed him to have a few things that normally he wouldn't get, plus assuming a phenol issue there are things in his current diet that are high in them.

Like the s.boulardii, the closer to bedtime he gets them the higher his aggression the following day. We feel that 1x/day and by lunchtime work best for him. If we give him something off diet, we will give him a second dose, as early as possible. And that seems to be working well.

In general, his reactions to foods have been better, and his general processing seems to be MUCH clearer. Although the bum rash and his appetite are still negatively affected by off diet foods.

Now, for a little curve ball...on top of everything else we've been dealing with we've got this gross stomach thing running through the house. Lots of throwing up and lots of running to the bathroom.

And now I have a question...isn't the purpose of throwing and the runs a defensive mechanism by the body in response to a virus? You know, like a fever is an attempt to make the enviroment difficult for the virsus to reproduce until the body can build the antibodies to defend itself...isn't throwing up and diareah a similar thing?

If so, what does that say then when everyone else, cousins, aunts, uncles, grandma, grandpa, sister, mom & dad, all get BAD diareah, but Coley doesn't, at all.

Does that say that his body is not defending itself, or does it say that he was able to beat it down better than everyone else??????????? The later seems highly improbable given his history, but other than complete loss of appetite and a few throwing sessions he's got nothin... He is drinking water, so I'm not concerned about his hydration at this time.

And of course his behavior is odd too...withdrawn and not much talking this am, last night he was VERY hyper, and yesterday he took a 6 hour nap 1pm-7pm.

He fell asleep on the couch while we were at MGH ER getting Audrey re-casted, and now the stupid thing fell off again this am...CRIKIE! They told us that it's all about comfort with this type of fracture and not about keeping her bones still...so if she is not uncomfortable with it off that we don't need to come back again...thank god! We have our follow-up with the ortho on Wed....and he barely woke when we got in, and then stayed there until 7.

I feel like I'm waiting for the other shoe to drop...he's clearly not better, but I can't tell if he's on the upswing, or if all hell is about to break lose.