Please help me understand very elevated IgE levels and effect on OCD/A

[braveheart]

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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[Debbie1]

Hi Wendy,

 

Dr. T. knows about high IgE levels. He once suspected it in my pandas kids. He did explain it to me, but honestly, I was lost on the explanation and could not explain it to someone else. My kids were tested, but results came back normal. If they came back elevated, I think he was going to refer us to someone to look into it further. You may want to contact him.

 

Debbie

[mkur]

Have you tested his thyroid levels t3,t4,free_t4,TSH. Alot of ADHD and TS kids have thyroid problems. You need to rule this out.

 

Good Luck.

[Tamistwins]

Hi Wendy,

 

Dr. T. knows about high IgE levels. He once suspected it in my pandas kids. He did explain it to me, but honestly, I was lost on the explanation and could not explain it to someone else. My kids were tested, but results came back normal. If they came back elevated, I think he was going to refer us to someone to look into it further. You may want to contact him.

 

Debbie

Hi my sons ige is also elevated, it went up every blood draw. Dr. T was aware of this and mentioned he sees this in many patients.. But... Nothing was really done about it. He never had allergic reaction to food, his ocd is extreme and he is a picky eater just like u had mentioned. He did have environmental allergy tests and was basically allergic to everything but there was no need for shots. I don't see that he is allergic. I wish I knew how it related to ocd.

[JJMom39]

I cannot help with the IgE levels, but do have one thought/comment. 5-htp affects serotonin and GABA affects the neurotransmitter GABA. The neurotransmitter GABA is the main inhibitory neurotransmitter, but supplementation with too much GABA can cause anxiety or anxiety to increase. That happened to me after taking GABA for a while--it initially helped, but when my level became too high I became more anxious. Maybe check the dose and keep an eye on the dose and any increased symptoms. I know with other things going on it can be tricky to isolate what is causing what though.

[mom md]

My son's IgE levels were 280 but he also was allergic to 95% of the things they skin tested him for. His allergist said this was more a reflection of his immune system being in overdrive/dysfunction than true allergies. He also has no huge allergy symptoms or food allergies.