Re:Not Pandas but infecttion/illness effecting OCD

November 11, 2009

My son has the same thing too - an illness can set him off- usually get better

after 2- 3 months after the illness subsides, but not always. Last Feb it sent

him form pretty well to moderate and he never got better til we did some really

intense CBT/ERP through USF via Scype. I will say that I think there is an

entity called PITANDS which is kind of like PANDAS except it is not strep

realated but due to any illness - thought to be due to simiar mechanism of

antibody formation attacking the brain- not much research done on it and I

certainly cant find anyone around here willing to do anything about it but all

the chat about antiinflamitories lately is very interesting. Makes me think

about all the dietary anti inflamitories available - anti oxidants etc. We are

alread y on fish oil , and vit d among our daily vitamin regiem, but

hmmm....can i spend more money on vitamins??????

November 11, 2009

Our Neurologists (we have 2 of them! Being a PANDAS mom means a nearly full

time search for caregivers!) prescribed Azithromyacin. She took a full dose,

and is now on a fairly low dose of Azith every other day for two reasons - 1. to

prevent strep as much as possible and 2. because of the immune modulating and

anti-inflamatory properties of this antibiotic. It has been tested in kids with

other auto-immune diseases, and found to have those properties. At this point,

despite being a " emergency only anti-biotic mom " in the past, we are now

agreeing to giving this to her for some time to come. We also did the

Cunningham test, and Meg was in the average PANDAS range at the end of an

episode. But way out of the normal range. My understanding is that for some

kids, after the initial strep vulnerablilty, then other illnesses or even just

exposure can trigger the activation of the antibodies that Cunningham is

studying. So perhaps PANDAS comes first, and PITAND comes after.

Clearly, we will all be eager to see the state of the research in 20 years. In

the mean time, having the proof of the mouse study from Columbia has certainly

helped eliminate much of the controversy over this illness. At a dark time, I

remember crying to Meg's therapist about needing answers and getting so much

different advice (and conflicting) advice from professionals. She was pretty

blunt - and said that we are on the front edge of this research, and that at

some point, I would have to trust myself, and then go with the caregiver that

best matched my decision. It's very hard, but we have done that. We treat her

as best we can and document absolutely everything, in the hopes that it will

helpful to someone else someday. , I have often wondered if your son might

have PANDAS. We also found that intense ERP helped. But for us, the relapses

were so sudden and dramatic that we felt she needed more medical treatment as

well as ERP. I know a lot of moms on Latitudes talk about natural

anti-inflamatories, you so may want to check there.

Should he ever have a relapse, the 2 things I would suggest to you are to submit

blood for the Cunningham test, and to do a phone consult with one of the

professionals that help kids with this. If ever necessary, you could travel

there, or find a local doc to consult with Dr. Latimer or Dr. K. Best -

in NC

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> My son has the same thing too - an illness can set him off- usually get better