PANDAS treatment

[Mary Peabo]

Hi,
I am new to the the group and have some questions for anyone who is dealing with PANDAS in their children. I have two children who have what would be considered an atypical PANDAS: More rage, defiance and fine motor and learning disabilities than OCD. The 6 year old (boy) has responded quite well to zithromax, but the 12 year old (girl), who has probably had it for over 7 years did not respond well to antibiotics. I should add that my daughter has many medical complications that no one quite understands and so is difficult to tease out what symptoms may be PANDAS and what symptoms are specific to our family's own peculiar syndrome (congenital cataracts, GI dysfunction/ dysphagia etc) We have begun IVIG tx with her, and are now two weeks out from her first double dose treatment.

I am wondering what other parents have found to be successful treatments, and am especially interested in results of IVIG tx. What kind of changes did you see and with what time frame after treatment. How many treatments did the child receive? Any info is appreciated.

I have found lots of research, but not much personal experience from parents.

Many thanks,

MB

[peglem]

Hi! My daughter(13yo) does not have an official PANDAS dx- but defitely has the same reaction to strep that you describe in your post, +OCD. She, too, had it for many years before she was ever tested for strep, the behaviors being chalked up to her primary dx of autism. Plus she is nonverbal...so hard to figure out. (personally, I think alot of what is considered her autism is from the strep problems) Her current pediatrician is treating it like PANDAS.
Zithromax is the only antibiotic she seems to respond to. She is on a 5days on, 7 days off cycle with that. By the 4th day off- I see a huge increase in streppy behaviors. Her dr. says its not safe to give all the time- so we live with it for 3 more days. W/in an hour of the 1st Zith dose, she is greatly improved. However- with all this antibiotic use- she has/had problems with yeast overgrowth, which presents with similar behaviors, only more emotional lability. A combo of Zithromax, diflucan, probiotics and S. bouardii are what we are using for some measure of improvement. Actually compared to 1 year ago at this time-the improvement is amazing. Its so hard to keep all that gut stuff balanced.

I usually post on the autism forum and Allie's treatment is discussed pretty extensively there. If you want to take a peek:

http://brain.hastypastry.net/forums/showthread.php?t=15497