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I'm SO confused, and would appreciate your help very much!

 

My 12 year old son has been treated for PITANDS and PANDAS since 11/09 (for tics originally, then Pandas tx, but ocd/anxiety/new stimming still an issue).

 

His bloodwork stats:

 

IgE:

11/09: 580

5/10: 1030 (post bad PANDAS outbreak, Dr. later said if he tested 10K kids, less than 10 would have such high levels?)

3/11: 738

 

In a nutshell, Dr. thinks if IGe were to go down, son would be a much happier, relaxed boy. But how to do this???

 

During those same dates, his PANDAS titers were:

11/09: ASO 413, DNASE B 273

5/10: ASO 389, DNASE B 191 (post huge PANDAS outbreak)

3/11: ASO 363, DNASE B 202

Of note is he's been on antibotics (every other day, then daily) since 5/10, too afraid to take him off as he regressed when we tried, but his titers really aren't different from 5/10 - confused).

 

He doesn't show signs of allergies - at least not like he did pre 11/09 treatment start. Now just an occasional stuffy/runny nose. So is food doing causing such high levels of IgE? (he's ocd about eating healthy, exercise, distorted body image, lack of confidence, anxiety/worrying, etc.) or environmental/inhalant allergies? How is he manifesting what's happening with these high IgE levels??? Is it possible ocd/anxiety are presentations? I've heard IgE can be dangerous re food allergies - but we haven't seen anything like this, not even hives. (When baby/toddler he did have lots of food allergies/hives/sinus & ear issues but not since).

 

He's never had a yeast problem. Last visit Dr. saw no signs of viruses/bacteria, but feels his dopamine may be low (ran 2 conflicting tests). He's hoping it's because of a growth spurt is coming, but son has not grown taller or heavier since 11/09, and his IGF-I (HGF) was 181 on 3/11 (normal for 12 year old is 143-966, elevating with puberty, so it doesn't look like puberty is soon).

 

Son's currently off antivirals, been doing some form of the B12/B6/FA shots/cream this whole time (recently went back to compounded version of cream and he is A LOT better mood wise), still doing antibiotics daily (zithro 250mg), an immunity building spray, and we've added GABA and 5HTP sprays - a therapist suggested trying to increase serotonin to help the ocd/anxiety. GABA says it helps stimulate HGF - who knows.

 

I know this is a lot of information, but I really am confused and would appreciate your insight and experience. Will also post on OCD board, but I'm most familiar with the PANDAS board.

 

Best - Wendy

 

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