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Any PANDAS kids?

Submitted by an LD OnLine user on

I am convinced my 10 yr old son has PANDAS and was wondering if anyone else’s children have had sudden tics happen with a strep infection. He was tic free the beginning of March 2007 and then suddenly has a neck (head shaking) tick quite often. We treated the strep, but the tics remain and wax and wane. A sniffing tic usually happens when he goes to bed. He has been a little moody but no major OCD which I hear is also the result of PANDAS. I just want to know what else I can do. Our neurologist gave us Tenex to reduce the tics, but we are only 1 week into the “ramp up” low dosage, so no change yet. His ASO titer count was 310 when he has the strep (200 being normal) and a month later it has dropped to 271. I am hoping that once the ASO titer count gets back to normal so will he, but maybe the brain needs time to recover. Anyone else with similar experiences?

Submitted by JakeLA on Sat, 07/07/2007 - 8:06 AM

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I have a 5 year old that started to develop tics rapidly, but the severe symptoms developed over a year after a strep infection that we KNOW he had (in fact it became Scarlet Fever). Once it was determined that he may have PANDAS, a titer was performed and found to be in the 1,300 range. He was immediately placed on antibiotic (2 weeks) and within a week of the antibiotic treatment the symptoms lessened, but still remain. Some days much better than others.

Also - his tic symptoms do follow another pattern, which is the level of stress in his life. Recently went through a couple moves, living with an Alzheimer’s grandfather and domineering grandmother. Symptoms went down after antibiotic, but this also coincided with a vacation to the other grandparents that shower him with love and attention and he gets lots of outdoors fun and fresh air. I am still struggling with what is the cause of these symptoms and what to do about them.

Should I have another titer done? We are considering Gluten Free / Dairy Free (actually we have just started this).

I am petrified of how he will be treated by his classmates and teachers in Kindergarten this fall…

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