On top of everything else...

[peglem]

Allie's ped called yesterday with her lab results. Two concerns-Low IGg and high blood glucose (pre-diabetes level)

On the IGg, subclasses were not run, and I don't really know the implications of that, except that her ability to make antibodies is lowered? I know he wouldn't have mentioned it if it was borderline low...but, I have to wonder if the 2 1/2 years of prophylactic Abx has anything to do with it. I need to dig out her medical records and check her previous records. But, from the bit of research done, the treatment for low IGg is.....prophylactic antibiotics.

Blood sugar- I checked the ranges: (this was not a fasting test) For nonfasting anything over 140 is considered abnormal. Hers was 159, but that is not high enough for diabetes.
Anyway, the plan here is to get three days of twice daily readings (using my husband's glucose meter) once, AM before eating and again, later in the day after eating as close as we can get to a "meal". Normal fasting is 70-100. 126 and above indicates diabetes. 101-125 indicates "pre-diabetes", or high risk for developing diabetes. This morning she was at 114.

It will be challenging to get all three days done (but at least they don't have to be consecutive) because, go figure, Allie doesn't want to get her finger stuck. I'm so glad we can do this at home!

To do this morning's stick, I told her Dr. S (I think she's got a crush on him) called and was worried about how much sugar is in her blood so he wants us to test her blood to see if its making her sick. She was cooperative (though couldn't fully suppress the impulse to jerk away) and it wasn't as hard as anticipated.

Anyway, there's probably no reason to worry much yet, but on top of all this school crap, it almost seems like too much.

[Kristen (ColeysMom)]

OH YIKES!

Obviously you know first hand how much it $ucks to deal with this type of thing, I'm sorry! and hope it ends up just being a fluke. Keep us posted on her readings, K.

As you know, we had to keep track of Coley's for a while, and it DID turn out that a lot of his behavior was related to his levels...so this might end up being an important piece of information for you too...that could be good!

We still need to be careful with him, but we've got it pretty well figured out now...lot's of protien & complex carbs seem to be the key for us. Lots of fats (which we were pumping in for wieght gain) and as you know fruits/veggies turned out to be the villians...crossing everything that you find a similar silver lining to this, as we did, if it's more than a fluke that is...

I don't know at all about IgG...but do know that when Coley's BS was swinging left right & center...he got sick a lot...so don't know if one could be related to the other...just hoping, of course, that this is simple and manageable for you guys!

All of this IS too much...too many ups & downs and everything else...what did the Dr say about the IgG? Are there next steps with that?

[peglem]

what did the Dr say about the IgG? Are there next steps with that?
He just said that's probably why she wasn't able to clear the strep on her own. I think probably it confirms for him that prophylactic Abx was a good move, which, when dealing with Allie, its kinda nice to get reassurance that you've done the right thing. So, much of her treatment is trying stuff because it seems like it might help based on the limited information we have. I think he still has this IVIG thing in the back of his mind, he mentions it in passing from time to time, as though I thought of it. He did say (though the thought hadn't really occurred to me) that the IGg was not low enough to warrant IVIG. I wonder if he talked to the immunologist before he called me?

[lisa6wks]

Peg,
If you are having too much trouble sticking Allie's finger, she may be young enough to use the urine strips. I had to do that with my children, the doctor said that children show diabetes so quickly, that the urine strips would suffice. Also I wonder if being diabetic or pre diabetic would explain her propensity for strep. I think diabetes makes it harder for people to get rid of infections.

Lisa

[peglem]

Well, this evening, Allie did even better with the fingerstick than this morning. Just as long as I tell her Dr. S said we need to check her blood.

But, this is kinda interesting...her fasting level was 114 this AM, but after eating this PM, it was only 105.

[milivica]

I don't know a thing about diabetes, but I'm guessing the fasting number should have been lower than the PM number. Right?

I'm sorry you have this on top of the iep stuff. I did wonder if this medical information could lead to more that could finally explain the strep or even sibs???

[peglem]

Well, she had the strep problem for years before this blood sugar thing came up.

But, yeah, I think the AM one should have been lower than the post eating one. I'm wondering if her vitamins or Lamictal might lower her blood sugar...she had both of those about an hour before the stick. I did read that Lamictal can cause lowered blood sugar-a SE that causes hypoglycemia for some. But, I've wondered before if she might be having blood sugar high/low spikes. Especially since she doesn't eat much during the day at school.
This morning, I told her Dr S says she needs to eat at school...she did eat some!

The next time we see the psych, I'm going to bring up trying naltrexone. (Dr. S says its very safe-they use it even in newborns who are born addicted to opiates.) By using it before bedtime, during the night it blocks opiate receptors, which causes the body to increase production of endorphins. The block wears off before morning (so those receptors can now latch onto all those endorphins). This is being used for 2 things that Allie has trouble with: immune dysregulation (endorphins actually modulate the immune system) and SIBs. So, I figure its worth a shot. and possibly I can get rid of the Abx if it works, and then I wouldn't have trouble with yeast, either.

Sorry, that was probably a whole lot more than you wanted to know.

[Kristen (ColeysMom)]

Pegs, we had a similar thing happen...but it was the fructose that was driving DOWN his BS.:rolleyes:

Insulin doesn't breakdown fructose...it is processed through the liver. His liver wasn't doing it's job and fructose was getting into his blood...it aint supposed to be there!!!! His endocrine system recognized the 'sugar' in his blood and sent the insulin to reduce it...well it has no affect on fructose, so it only drove down the glucose levels...fructose still present, more insulin...lower glucose...on & on...until CRASH!

Doesn't sound like you are in this situation. But could be something similar...where 'something' is triggering a higher than necessary insulin response....or maybe on the flip side (fasting side), a defective process.

If you haven't looked at the fasting metabolic process...it's VERY interesting...

[peglem]

This morning her fasting level was 184. I wish I knew more about this. I know we've only done 3 levels, but the trend seems to be that levels are higher after a fast.
I'm really worried about having to do the 3 hour, drink that sugary syrup test.
1) How the heck would we get her to drink that stuff in the 1st place?
2) a series of blood draws over several hours. That sounds like a hell I've not encountered thus far, and I've been through some pretty difficult things with Allie.

Well, no use worrying. Guess I'll just deal with it when/if I need to. (she said to herself, not entirely convinced)

[Kristen (ColeysMom)]

Pegs don't worry about that test.

Have you had a chance to read up on....ahhh, I think it's the ATP cycle??? I forget, it's been a while...like 3 years since I read all that stuff...but it's WAY interesting...anyway, if you're like me, then just having that understanding will help your 'worries'...

I think what this means, if I remember right, is that Allie is converting too much stored energy (fat) into glucose during the process. I'm sure there are lots of reasons why this could happen...but reading up on it will give you more information for which you could narrow things down.

How is she in the morning anyway...are mornings tough for her?

About the test...without knowing the possible implications of HBS after fasting...I'm guessing that if it's important enough, the drs will do what is necessary to get further information...like at one point an inpatient fasting study was considered for Coley..at the same time we talked about fructose challenges too. Take a deep breath and one step at a time.

I found an amazing site once about the ATP (?) cycle...I'll see if I can find it again & post it.

How have her evening levels been?

[[[hugs]]]

[Kristen (ColeysMom)]

I couldn't find the site I used to refer to when we were dealing with this type of thing...but do remember it was a school...it was similar to this, but had WAY more detail, including actual syndrome & desease information for breaks in the process. I'll keep looking but this will give you an idea:

http://www.unisanet.unisa.edu.au/08366/h&p2carb.htm#glyc_hormones

I skimmed things a bit...it seems there could be a disfunction from either side of the coin...too much glucose or ineffective insulin (which would be consistent with family history, right?).

There seems to be a lot more information that would be necessary to move forward infiguring anything out...obviously the rest of the testing....and then also her cholestoral, etc. Does she get much physical activity? Stuff like that.

I know you're wigging out a little, generally more information helps me feel better...so hopefully I'm not adding more fuel to your nerves.

How many days did the doc want you to collect data? When do you touch base with him on this?

Did he talk at all about referrals IF things come out one way or another? Endocronologist or Metabolic Specialist?

I'm remembering an IEP meeting I had once...it was in the midst of our biomed chatter...where the spec-ed coordinator talked about their 'perpective' of Coley's weaknesses. They told me a story about a girl that was approaching HS that was going through a behavioral assessment/planning...it turned out she had undiagnosed diabetes...do you remember that?

Of course we don't want to learn that Allie has some difficult to manage or even danagerous health issue...but Pegs, this could lead to some important information...I'm crossing my fingers for that!!!!

Let me know if you want me to help look anything up...or shut-up.

[[[hugs]]]

[peglem]

The doc wanted us to collect 3 days, AM fast and 1/2 post meal. Get back to him this week when we've completed testing.
I found out yesterday that MIL has a sister w/ type1. Allie has a cousin w/ type1, but hub's is type2, as are 2 of his siblings(I believe that comes from their dad.)
Allie really has no fat stores and gets alot of physical activity-trying to get her to not move is a problem.
I read your link, but things aren't sinking in. I'll have to get back to it after a few more cups of coffee.

But, it could just be that she gets hypoglycemic during the night and her body rebounds with glucose...right? She MUST NOT HAVE DIABETES!!! I can't even contemplate dealing with that, its too unfair.

no, I'm not wigging out

[Kristen (ColeysMom)]

Here is some on the fat metabolism process from the same site: http://www.unisanet.unisa.edu.au/08366/h%26p2fat.htm

I haven't had a chance to look more for that other site.

She has to have some fat, it's required for organ function, particularly the liver, kidney & pancreas to perform conversions during fasting. There is a certain amount of glycogen stored (which is ready to use 'glucose') but that's generally enough for between meals or during high performance times...which if she's very active could be part of the problem...but during the night is when the body generally has to convert stored fat (glycerol) into glucose...this is where ketones come from...which might be a good piece of information too. You can pick up test strips at the drug store to test her keytone levels at various points during the day...especially in the morning. Keytones present will tell you if she's converting fat or not.

Anyhoo...there could be something else going on that is generating a higher need for 'energy' at night too.

Do you have 3 days worth of results now?

Now, let's not jump to any conclusions...firstly at worst her levels indicate that she COULD be PREdiabetic, right? I don't really understand the types of diabetes other than one requires insulin injections and the others don't...but I do know that it can be managed. Basically the same way we needed to manage Coley's...low/no simple sugars/carbs, low fat, and higher protien. YUP! it was hard getting him to eat properly, particularly since eating isn't his favorite thing, but we got him there. And you can do it too.

Do you have anything like a trampoline or something that she can just burn burn burn extra? I know, I know...scary thought when she doesn't eat enough to stay on the better side of pick-thin...but fight that impulse...the body WILL do what is necessary to survive! Weight training has done wonders for Coley too (not formal training, just encouraging more strength training, than cardio type activities & 'chores').

I'll see if I can find a better link...trust me though, from some of the other stuff I've seen you sort out...you're gonna love this...I find it SO interesting! But it is a lot of termenology to keep straight at first...especially since a lot of the terms are VERY similar.

Did the doc run any other labs?

[peglem]

We do have a trampoline and Allie uses it almost daily. We've only got one day complete + this morning.

Type1 diabetes=autoimmune disorder in which your immune system destroys insuline producing cells in the pancrease. Requires manual manipulation of blood sugars by injecting insulin.
Type2=the body does produce insulin but either not enough or the cells don't respond to it, can be sometimes controlled by diet, but oftentimes(like my hub)progresses to the point of also needing insulin injections.

I've managed to supress my worry to this small nagging spot at the back of my mind that only shows up when I'm not busy.
A helpful sight would be one written for children-those tend to explain simply enough for me to understand. But, I've a feeling that this is kinda like the immune system, in that there are tons of chemical players and it interacts with so many other body symptoms that I'll find it impossible to get it all straight.

The doctor ran a ton of labs (I can't remember them all), because he always figures if we're going to do a draw anyway, we may as well get all the info we can.)
The only other "off reading" was low IGg...that's been low in previous testing as well, but I guess this time it was even lower. I should probably get a copy of the labs.

[Kristen (ColeysMom)]

Actually it's not that complicated...I mean it's got a lot of moving parts...but it's more like gears where one gear isn't moving randomly, and it can only move certain others.

I was trying to find a general article on fasting metabolism, but came across this and had to post...

http://chronicle.uchicago.edu/991202/sleep.shtml

I think there is also something else to keep in mind too. Clearly Allie's body is under stress. We could guess about what all is causing it, poor sleep, week immunity, anxiety, etc, right? that could throw a TON of systems out of whack...and of course having those genes, it only stands to reason they 'show' during stress...

This is going to be a big puzzle piece Pegs, I just know it.

I need to give Audrey some time...I'll see if my fructose file has any docs from that other site a bit later...

[peglem]

Well, I have to say, that study has a lot of implications for my hub. In the 20 years we've been together, he's not had one decent night's sleep. I've been after him for years to get a sleep study done...finally he goes in tomorrow night. I just know if they treat him successfully, its going to make a huge difference in his overall health, including his diabetes.

For Allie, though, with just a few exceptions, her sleep has been pretty good for the last year or so. Or maybe that's just relative to how bad it used to be. But yes, she definitely has a high anxiety level for most of her waking hours + she's on meds (lamictal, proph. Abx) and its pretty clear her immune system has not been functioning properly for awhile.

That reminds me...the highschool is saying that the chicken pox vaccine is not covered by the "personal exemption" that I file each year re:vaccines. WTF? I can personally exempt her from other vaccines, but not that one?

Maybe her testosterone levels are too high? Just joking.

[Kristen (ColeysMom)]

Pegs, start with this. It looks intimidating, but if you just read it ignoring all the blue words...it gives a good overview...then little by little you can investigate the blue words.

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

Especially if you get those lab results. You might see that some are on the low or high side of normal, maybe just outside the range...stuff like that...then poke around a little more.

Are you going to complete the testing tomorrow or are you taking days off between?

Does Allie have a snack right before bed? If yes what is it usually (starchy, protien, fat, random)? Depending, I might change that the night before your last morning test to see if there is an impact.

As for sleep. I often wonder about Coley's sleep. Sure he is IN bed more than he used to. He's not having phychotic episodes in the middle of the night...so I count that as good too...but when he sneaks into bed with us...it's clear he's not sleeping well. Sure he's IN bed, but I don't at all think he's getting what his body would like, ya know.

And even if he was like a log all night, that doesn't necessarily mean his body is resting well. Like with apnea...snoring isn't always present, but a constant exhaustion is...ya know.

We've read enough studies here about quality of sleep & ASDs that I think it'd be worth checking Allie out too...especially if DH's study shows something.

I hope (in a good way) that the sleep study helps and that some treatment has a positive effect on his diabetes!!!

I'm learning that the apple doesn't fall far from the tree, the more time we sort through this stuff with Coley. No his labs don't say he has a thyroid issue, but neither does DHs...but he does...and funny how the same sorta 'treatments' (more frequent meals, exercise, lots of rest, specifc diet, etc etc) balance them both out, ya know. Coley's also got diabetes in his genes...but not as much thyroid desease...that inescapable for him!

[peglem]

Yeah, Allie has thyroid problems in the genes too. (again, dad's side:rolleyes:). Allie hasn't has a sleep study per se, but during the 8 day eeg last year, they said she didn't have any seizure activity while she slept. I should go back and look at that report too, not sure if it was "normal" during sleep or just lacking seizure activity.

The problem with running all these tests is that its hard to get Allie's cooperation...which makes them attribute everything to anxiety levels, which leads them to conclude that we are not drugging her enough, so go see a psychiatrist. KWIM?

I'll look see when I get a chance...

[Kristen (ColeysMom)]

Well, I'm not at all trying to convince you to DO all this stuff...but there are ways around tests to find answers...I think (just from memory) that REM sleep is the important piece...where cell repair and regeneration occurs, so if there is something to the sleep piece for Allie, I think that sedating her wouldn't change those results.

Or you could always do something like video her during the night to see how 'restless' she is.

I think there's also a monitor that can record at home and turned in.

That EEG was just last year???? Did you get the full report or just the summary? I would think the full report (perhaps even the summary) would comment on sleep...make some statement. She doesn't necessarily need a seizure or even spikes/waves to have something noteworthy I would think. Just a guess, but I think if she was having trouble moving between stages or even holding a stage it would be noted, but there may not be much they can do...this may be where all that stuff you get & I don't would come in handy...that generating certain chemicals to get to better sleep...same thing melatonin does, right? I can't even talk about it, it's so over my head...

Course without info it's all a guess...just something to consider...

No we don't want Allie to have to deal with this, but this could provide some very good insight and direction...hoping for that!

I wonder if the meds are complicating things too (distorting metabolism I mean)...I dunno, I have no idea...just one more reason I hate them...I know you gotta do what you gotta do...but it's times like this that it really merkies things up, ya know.

Does your DH see an endo or just his primary for his diabetes?

[peglem]

He sees an endo...seldom even sees pcp anymore.

I don't think they were checking for REM sleep on the EEG. I don't know enough about it to know anything either...I mean, could they tell from the eeg if she did have REM sleep, or is that a different kind of monitoring? The report I have is the Neurologists report, but it briefly describes the eeg findings.

But, you're right, this could put us on a pathway to figuring some more of this puzzle out.

I had been giving Allie melatonin to fall asleep every night, but started noticing night waking (@4 hrs after dose), so have cut back on it...Valerian root and magnesium (which is supposed to help lower blood sugar) instead, but those don't help her sleep as quickly, so I'm giving just a smidge of melatonin if she's still up 1 hour past bedtime. The melatonin seems like it causes her to be much grumpier in the mornings, but not at the lower dosage-1/4 of a 3mg tablet.

[RathyKay]

I'm late to the party, and I need to run pick up my kids right now.:rolleyes: Just throwing this out: http://www.rxlist.com/lamictal-drug.htm Make sure you're on Page 3, not quite 2/3 of the way down:
Metabolic and Nutritional Disorders: Infrequent: Aspartate transaminase increased. Rare: Alcohol intolerance, alkaline phosphatase increase, alanine transaminase increase, bilirubinemia, general edema, gamma glutamyl transpeptidase increase, and hyperglycemia.
Sure it says Rare, but doesn't Rare fit Allie? And I've found many Rare side effects from kids on Child Neuro.

[Kristen (ColeysMom)]

So that's kinda good, because he can talk to the endo about this, IF it turns into something...he can either take Allie on or recommend someone.

DH has had numerous conversations with his endo about Coley...it REALLY helps!

Yes, REM sleep is evident by specific waves. They would know exactly when she was sleeping, and at each stage...then if there was anything 'abnormal' about it...they can even tell when body parts are moving & things like that...although it may not be worth mentioning unless there is something to warrent it, ya know.

A tech (usually a neuro) interprets the 'data'...then that info is sent to the ordering neuro who summarizes it...makes conclusions & recommendations, although that could also be in a techs report.

I would think that the tech would at least say, subject entered REM sleep at such-n-such time for x length of time, no abnormalities noted...or whatever, ya know.

I would try to get your hands on the full analysis to see if anything jumps out. Or even just call the neuro and ask him about any notes on her sleep...probably makes sense to wait until DH gets his complete though, then you could call it a double check...based on everything.

I don't know too much about how melatonin works...just enough to know that it shouldn't interfer with her alertness in the morning, should be out of her system, right? I wonder if she's reaching that stage (with the help of the melatonin) then maybe not able to get out of it so easy. I dunno...

How long did you use it at the higher dose?

What is supposed to generate melatonin naturally? Activity right?

ok, just looked this up...you've probably seen this, but figured I'd link it just in case: http://en.wikipedia.org/wiki/Melatonin

So do I understand this that light (or lack of) generates melatonin naturally? And wow! looks like smaller doses are likely more appropriate!

And it is directly related to immunity? And thyroid...I'm going to start taking it!

I'd give it to her maybe earlier and every night for a while to see if regular routine (assumed better REM) has an impact in her mood/behavior/appetite/etc. Then I'd be interested to see if there is also a change in her BS. Although, I wonder how long it would take before endocrine systems normalize, assuming it's out of kilter from poor sleep. I didn't read that entire study, did they talk about that?

Hey, I'd sneak some of that into some chamomile tea for DH too! Or whatever he might have before bed! :) I might do that too!

[Kristen (ColeysMom)]

Ok, so I just double checked the study. They suggest more than eight hours per night, 'recovery' and it only took 7 days to normalize... might be interesting to see if this helps Allie's levels. How many hours is she in bed each night?

ETA: It's about time Kathy...wondering when you were going to get here! LOL!

[peglem]

Iused to, years ago, give Allie 3mg of melatonin...when the sleep issues were really bad. It helped a little back then. When she was on risperdal, she didn't need it and then after going off risperdal I didn't use it for awhile until things started getting really out of hand again. Then I started back at the 3mg dose again...for awhile, but mornings were even worse (course it takes time to sort out what is causing stuff). So, then I tried not giving melatonin and just using some OTC sleep formula (natural ingredient stuff) that didn't have melatonin in it and that worked good for awhile and she was even doing well on just the valerian root...for awhile. Then the last couple of months here, sleep issues came up again and so I tried 1.5mg of melatonin, which worked, but started getting the horrible morning crap again. Still the mornings after I haven't needed to use melatonin to get her asleep are much pleasanter than when I've used it (even the little smidge dose).

The neuro's report said, "Normal sleep architecture." During her 8 day VEEG.

[peglem]

So the final Levels that I called in today:
may 21: AM fasting-114, after PM meal-105
may 26: AM fasting-184, after PM meal-189
May 27: AM fasting-102, after PM meal-103

Her doctor called me back and said the 26th was rather high, but said it was up to me how aggressively I want to pursue this...she's not in any real trouble so far and it may be caused by one of her meds..But, its curious that it fluctuates so much from day to day, since her meds are given consistently. So, we're going to go ahead and get things checked out by the endo. Its been a couple of years since she's been seen by one.

[Keggy]

Why the heck does your husband use a finger stick? Most insurance companies allow for new meters every few years, the new meters you do the arm and its practically painless. Switch!!
Second... I hope she is using her own lancett. Its not something you should share with anyone, even family members.

I would bet this fluctuation is her meds.

[Kristen (ColeysMom)]

That sounds like a good idea Pegs.

Are you going to keep checking her?

BTW, did you notice differences in her behavior that might imply it had something to do with the levels?

Keep us posted. Crossing everything that something here shines some light!!!

[RathyKay]

I guess I wonder how much is diet and / or meds. Maybe it's so much higher that one time due to whatever she ate that day combined with Lamictal. I don't suppose you were tracking meals, too.:o I was also wondering if maybe it's higher in the morning because she doesn't have any food to "interfere" with Lamictal? Or maybe the inactivity of sleeping doesn't allow the extra glucose to get burned off? Pure speculation on my part.

One other thought I had on this, slightly OT. Hal, over gluten sensitivity, (whom I haven't seen post in ages) talked about high blood sugar encouraging yeast and whatnot to grow. My itchy ears:o. I think there was a Pub Med paper on diabetics having lots of foot funguses and other delightful stuff. I really think it was geared toward growing on the outside of the skin, but feeding off the sugar in the blood. Do you think that has anything to do with Allie's recurring strep? Could it be surviving on the sugar? Or do you feel like you've finally beaten up? I guess I was wondering if you tried a low carb diet with her, if that would finally kill it for good. (It can help with diabetes, too. You have to be on the cautious side when you first start. Otherwise, the body can think it's hypoglycemic when it's perfectly fine, just because it's been out of whack for so long.) Anyway, pure speculation, as I mentioned before.

[peglem]

Why the heck does your husband use a finger stick? Most insurance companies allow for new meters every few years, the new meters you do the arm and its practically painless. Switch!!
Second... I hope she is using her own lancett. Its not something you should share with anyone, even family members.

I would bet this fluctuation is her meds.

Yes, she's using her own lancett. Don't know why my husband is using finger sticks.

[peglem]

I think I have it figured out. The 2 lower glucose days were following days that she had the bethanecol. The high day was after 3 days w/ no bethanechol. So, I looked it up and acetylcholine modulates insulin release from the pancrease. I was trying to pulse the bethanechol, because it seems like improvements are seen with it when she first gets it, and then she kinda reverts back.

[RathyKay]

I think I have it figured out. The 2 lower glucose days were following days that she had the bethanecol. The high day was after 3 days w/ no bethanechol. So, I looked it up and acetylcholine modulates insulin release from the pancrease. I was trying to pulse the bethanechol, because it seems like improvements are seen with it when she first gets it, and then she kinda reverts back.
Oh! I've been meaning to ask you about this. Have you looked into Galantamine for acetylcholine increase? I don't know how they compare. Perhaps galantamine might not need to be pulsed? Or you could alternate the two and have more consistent results? Anyway, I just wanted to be sure you'd heard of it.

[peglem]

Seems like I may have tried galantamine sometime way back...If I remember right, it didn't work very well. Isn't it a cholinesterase inhibitor?

[tgrimes]

I don't think they were checking for REM sleep on the EEG. I don't know enough about it to know anything either...I mean, could they tell from the eeg if she did have REM sleep, or is that a different kind of monitoring? The report I have is the Neurologists report, but it briefly describes the eeg findings.



Wow, how do I keep missing stuff like this? Just wondering if the entire EEG was a sleeping EEG, and if so, was longer than 90 minutes?

[peglem]

Wow, how do I keep missing stuff like this? Just wondering if the entire EEG was a sleeping EEG, and if so, was longer than 90 minutes?

It was an 8 day continuous VEEG, so got 7 full nights of sleep monitored. The report from the neurologist said, "normal sleep architecture."

[Aspigander]

It was an 8 day continuous VEEG, so got 7 full nights of sleep monitored. The report from the neurologist said, "normal sleep architecture."

They had her hooked up to an EEG for 8 straight days?

[peglem]

They had her hooked up to an EEG for 8 straight days?
They sure did.

[Aspigander]

They sure did.

Ooooookay. So she was cooperative to lay on a table, strapped to a machine, for over a week, straight? I'm impressed!

I guess as you said earlier she must have a crush on Dr. S. As long as you tell her he said to do it, right?

[peglem]

Ooooookay. So she was cooperative to lay on a table, strapped to a machine, for over a week, straight? I'm impressed!

I guess as you said earlier she must have a crush on Dr. S. As long as you tell her he said to do it, right?
Oh, no, no, no..They hooked her up and then wrapped her head up like a q-tip. The cords were long enough that she could move all over the room and into the bathroom and whatnot. We occasionally had to unhook her and untangle the cords because she is quite active.

[peglem]

So, we saw the Endo yesterday. He thinks if its anything at all(hopefully its not), then it may be the caught by fluke beginnings of type 1 diabetes. So we'll run some blood tests to check insulin levels and antibodies to Isle of Langerhorn cells, and a couple of other things (because once you've got the stick done and the blood flowing you may as well check it all). I know we need this info, but I will really freak if that's what it is....then of course, I'll figure out how to deal with it. I'm trying not to think about it too much because this is scarier than anything we've had to deal with so far!

[Aspigander]

Isle of Langerhorn cells

Isle of what cells? Never heard of that type of cell.

Hope everything turns out okay.

[peglem]

Isle of what cells? Never heard of that type of cell.

Hope everything turns out okay.
That's the insulin producing cells in the pancrease. Type 1 diabetes is an autoimmune disease that attacks those cells so insulin has to be injected and monitored closely, since the body can no longer produce its own insulin.

[peglem]

*Phew* All the labwork for the endo came back normal! I'm relieved!

[Aspigander]

That's great! So basically the blood sugar thing wasn't much to be worried about? Or could something still be up?

[peglem]

That's great! So basically the blood sugar thing wasn't much to be worried about? Or could something still be up?

Well, its not type1 diabetes...still seems to be something wanky with Allie's metabolism, but I'm not going to worry about it.

[Kristen (ColeysMom)]

Pegs, that's great!

I know you said you don't want to worry...and I'm not suggesting that you do, but just knowing what we went through with the whole blood sugar thing...and Coley's developmental issues and how SO much was changed after the fructose discovery...I gotta suggest that you see a metabolic specialist, if for nothing else but to rule out something wanky.

I know it's no fun going and dealing with the anxiety and then the blood draws...but what if it turns out to be something as simple as an intolerance...

just my paranoia I guess...but had to put it out there...

[peglem]

That's a thought, but for the most part, her blood work comes up within normal ranges. She definitely has some immune system issues, which I guess could be caused by a metabolic issue, but I suspect its more that the immune issues are causing slight metabolic issues. Had some testing done by an immunology lab at an Oklahoma University...Don't have results back yet, but they seem to have found some immune markers for PANDAS and are testing Allie for those markers.
Allie has completely normal poops, so I'm not worried about digestive issues. Her biggest problems are all things that point to basal ganglia damage/inflammation...so that's where we're looking.

[Kristen (ColeysMom)]

Coley had pretty normal outputs too...it was nothing digestive at all...it was all about his liver and what it wasn't filtering...and so what 'junk' ended up in places it shouldn't have been...which then compromised his immunity and neurology. It was also causing liver & kidney damage which would have produced more problems had it not been discovered...he was constantly dehydrated as his kidneys tried to flush his system...blood draws were a COMPLETE nightmare for that reason, so diagnosis was slow and frustrating.

But that was our specific issue...metabolic issues can (in some cases)affect digestive processes, but not always...like endo issues...ya know.

[Keggy]

Anyway, the plan here is to get three days of twice daily readings (using my husband's glucose meter) once, AM before eating and again, later in the day after eating as close as we can get to a "meal".

I know it may be tough to do, and you may already do this, but she should not use the same lancet as your husband.

[peglem]

She gets workups at least every 6 months for liver enzymes and kidney function. Its all good. What does seem to consistently come up abnormal is IgG and IgA. Seems to be some deficiency there. Then we've got the chicken and egg thing going on with the strep. Did the strep cause the immune problems or were there immune problems that made the strep be more problematic than it is for most people? On going investigation...

Interesting thing with the PANDAS...I post on another message board that is for PANDAS parents....and well, all the symptoms they post at disease onset sound for all the world like autism, except that it happens for most at a later developmental age. Sure makes me wonder if some cases of "regressive" autism are PANDAS related (currently, for some reason, the prevailing wisdom is that infants can't get strepA infections, so few would be tested), also wonder just how long Allie had strepA before we caught on.