T_Anna

His TSH is 0.01 - it was 0.67 in May I posted the ranges as well and the layout was messed up, sorry. I should have more numbers today from Fridays labs and have two pediatric endocrinologists who said they would take a look (both are personal Friends of other friends). T.Anna

You're prob correct. Glad there are more studies, that will help our kids. T.Anna

My friend's son was the first person I knew who had PANDAS. Until then I had never heard of it. Her son came back from sleepaway camp with OCD after having been ill with Strep at camp. He was afraid of the weather, washing his hands all the time, confessing to horrible things, separation anxiety etc. That was two years ago when he was 12. She hated that people didn't believe this was a real disease. They had gone to a PANDAS specialist, titers wre high , given Advil and Augmentin and CBT and he was better. He still didn't like going away on sleepovers. This year he begged to go to sleepaway again. Less than a week into camp he came home. My friend said he had anxiety and couldn't get over it. I suggested that maybe he was re-exposed to strep and she should try abx or Advil. She said no, she'd take him back for therapy. Yesterday she told me that she doesn't think he ever had PANDAS and that it was all bunk and the doctor a quack. Soemtimes I feel like I'm the freak telling people the world is round and everyone insisting it's flat. Why bother?! Sorry for the vent, just had it with a lot if uneducated people. I feel bad for this kid. T.Anna DS15

EAmom had a good point that Dr.K's sampling is far from random. Although Chicago/MidWest does have a much larger melting pot then just those three groups. I know that many people are more willing to follow a psych drug/therapy route here in NYC then try to understand and treat PANDAS : ( T.Anna

Ehhh! We have seen some improvement in mood and ability to come back from a angry moment quickly, but still have some time before we give up about progress since it seems to sometimes take time. I know there is some improvement because we are being more honest with what he should be doing to help himself and he is able to hear it better. Concerning issue is that his thyroid levels have been dropping and PEX is supposed to raise TSH because it removes T3 and T4 and his have continued to plummet. Ran tests Friday and have two endocrinologists ready to look them over. Thanks for asking, T.Anna

Ds15 is AG German/Russian (ashkenaz) Btw, listening to some archived Radio Pandas and heard that Dr.K said at some point that from over 800 patients the majority were Jewish, Italian and Celtic British (in that order). Anyone else have any info on that? T.anna

That's horrible! I wish I had suggestions. What insurance, maybe there is another pandas doc who can help. T.Anna Ds15

I may need to wait longer to test antibody panel, if we end up doing IVIG next week. Hopefully DS will feel better over the weekend with everyone home. The tests this morning will try to focus on more thyroid related numbers and to try and rule out Graves and Hashimoto. T.Anna

RANGE 08/15/13 05/15/13 01/02/13 11/17/12 TSH THYROXINE (T4) FREE, DIRECT SERUM .93-1.6 1.26 1.27 1.32 1.37 TSH .45-4.5 0 .01 0.679 1.09 1.71 HEMOGLOBIN A1C 4.8-5.6 4.5 5 5.1 TRIIODOTHYRONINE FREE SERUM 2.3-5.0 4.5 4.9 4 4.7 IMMUNOGLOBIN E, TOTAL 0-200 126 114 Here our how the levels have been trending. According to Dr.T, TSH levels should go up after PEX http://www.ncbi.nlm.nih.gov/pubmed/14614231 Can it be Hashimotos disease? We just had another blood test, hope we get some answers soon : / T.Anna DS15

He started to vomit tonight. No idea if it is from something he ate or what. He hasn't thrown up in a really really long time (usually a symptomatic to everything). Dr.S didn't think the thyroid was anything to worry about since DS's T3 and T4 are within range. I will try to get in touch with a local endocrinologist tomorrow, maybe I'll find someone who can give me a better idea. The symptoms are very similar to PANDAS symptoms anyway so how would I know which is which? Irritability, fatigue, feeling weak, mood swings.... Thanks as alway, T.Anna

Thanks for this thread. I just bought down alternative down blankets and a mattress cover to seal out everything. Mostly for my own allergies which have been going crazy. I live off Flonase. T.Anna

He doesn't go outside so weather isn't much of an issue. He was know 50,000 pill/once a week for 8 weeks and before that we tried D3 2000iu daily. But now we did 23amdme and it seems he will have trouble with vitamin d supplements. Having another blood test to get more thyroid numbers. T.anna

DS's thyroid levels are sinking. His TSH+free T4 is 0.010 His T4 free is 1.26 His triiodothyronine free serum is 4.5 Dr.T is ordering more labs and I sent the results to Dr.S since her DH is an endocrinologist. Ughhh! What does this mean? His vitamin d levels are 17.5 after months of high dose supplements. Thanks as always, T.anna T.Anna

Thanks. We had a blood test today and Vitamin D was on the list of tests. Thanks again! T.Anna

So great to hear good news! T.Anna

We have used and are back to using Valtrex. We stopped for a month and it seemed to be helping, so we are back on it. We are using it to fight Coxsackie. T.Anna DS15

Here are DS's mutations, how do I help DS? MAO-A R297Rrs6323TT+/+ MTRR A66Grs1801394GG+/+ COMT V158Mrs4680AG+/- COMT H62Hrs4633CT+/- VDR Bsmrs1544410CT+/- VDR Taqrs731236AG+/- MTHFR C677Trs1801133AG+/- MTRR A664Ars1802059AG+/- CBS A360Ars1801181AG+/- Thanks in advance, T.Anna

We just got the 23andme results and I cannot figure this out. What were the sites again? Except of course that he might not be bald and is likely to use heroin!! T.Anna

My son only does his choreoform movement when he is lying down. T.Anna

<<1. it's yeast>> We have found this to be a huge issue with DS. Can you get a trial of Diflucan to try it out? DS went from being very sedentary and having a LOT of choreoform movements to almost none (narrowed it down to the Diflucan as this happened on Augmentin and Azith). Also, we had a bad experience with SSRIs and NAC, where DS was hitting his head against the wall in frustration when fighting compulsions. We only tried Rispadral a few times when he was suffering from insomnia, it didn't help and we stopped, so I don't have much personal experience with it. T.Anna DS15

I am sitting here crying. That was inspiring. Yes, I think most of us would take the burden of illness and suffer instead. IVIG, PEX, Abx, New Meds & treatments, Supplements, etc. It prob takes a combination of all these, plus a lot of luck (faith if you are OK with that) that helps these kids. May we all be thanked one day...one way or another. T.Anna DS15

I would be curious about this too as we are planning to do another IVIG this week to help boost DS's immune system post-PEX. We are still waiting for big improvements, but have seen som mood improvements and appetite too so we're still waiting. Thanks for any responses. T.Anna DS15 Diagnosed 11/2012 trigger strep with co-infections mycoP, coxsackie Taken Augmentin, Doxcycline,Azithromycin, Valtrex, Clindomycin, Diflucan, etc. IVIG 2/13 & 3/13 PEX 7/30-8/3

<<n the mean time, get an appointment with the ped cardiologist and stay in tunned to dizzy spells, palpitations and such and keep a diary of any such events. Make sure your child is always well hydrated and not electrolyte imbalanced but as always don't go over board either.>> Thanks Dedee. It was a pediatric cardiologist and pediatrician, but it wasn't a full workup and since DH had a HA at 31 we will follow up, but now at least I can wait until leaving the house isnt such a huge issue. That said, I'd still be hesitant to put him back on Azith or Biaxin. T.Anna

No other folate, MTHR issues. Got the EKG and results are FINE!! QT intervals well withing normal range, etc. Thank God, one less issue to currently add to the worry pile. T.Anna

To my understanding he will be better protected with IVIG, since he now has extra & "good" antibodies. Isn't he also on abx? No reason why he would be in any danger. T.Anna