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We have a dd8 who has PANDAS with restless leg syndrome. She is doing better thanks to abx. I am writing about her little brother, ds4 whose behavior has drastically changed in last few months. In September he had a terrible sounding cough, during which he became extremely irritable and aggressive. He would attack us and hide in dark places where he would stay for a long while. By the end of September, we got him on a gluten free diet (his father has Celiac) and on Penicillin, 250mg x2. Slowly, during October his situation improved. Gradually, he became no longer extremely irritable and aggressive, but neither one went away completely. Two days ago, after 30 days, we stopped abx. These were as bad two days as we know with him. We did a blood test back in September, checking for ASO, DNase, ANA, and so on, before we put him on abx and all results were fine. He is worst in the morning and around dinner-time and his mood and behavior can turn on a dime. We have no bi-polar disorder in the family but do have auto-immune stuff. After reading Explosive Child which was recommended here, we tried some of the strategies and had some results. But, he does not fit this category 100%. He seems to be seeking your “no” and doing everything in his power to get it. As far as we know, he has no history of strep. He was bitten by a tick but no lymes. We are not sure what direction to take with him? Any thoughts?

NIH and Yale study is still looking for a few more cases. you may want to contact them.

We don't have any experience with steroids but from other posts I know some have had quite good results. I am not sure if your tried them. You can also start a new tread and do a search on steroid tapers of this forum. just an idea.

This is only indirectly related to the original post: whatever I know about PANDAS I have learned on this forum. Second, I am our kids main doctor (although I am not a physician) because I am the one who spends time with them, who knows them better than anyone else, as well as the one who has high stakes in their well-being. Now, I want to plead once again and ask you all whose knowledge and experience seems more important than any other resource for all of our kids: could we, please, post our kids brief histories? Among the things I have learned is that there are kinds of PANDAS/Pans. Some come with Lyme, some don't. Some come with OCD, some don't. Some come with high titers, some don't. But, there also seems to be a correlation between kids who have similar behavioral and physical symptoms and what helps them. Put another way, my DD8 seems to be a combination of "momWithOCDSon" and "Hayley" kids -- you may know what I mean. Brief cases histories that would include symptoms, what you tried, and what the effect was would, I think, help us all very much.

thanks. our kids are DD8 who was diagnosed with Pandas and ds4 who may have pandas. i am especially interested in how to talk about PANDAS in respect to anger, irritability, certain kind of slowness in getting dressed, regression, and so on. (By the way, it seems striking how our PANDAS kids, though their PANDAS is manifesting differently, do seem to have very similar behavioral issues.)

I've seen good advice on how to talk to your child's teachers about PANDAS. But, how do you talk to your child who has PANDAS about his/her condition? thanks in advance for your thoughts.

we heard, mainly, from one person about the effects of camel's milk on their PANDAS/PANS kids. Could someone else who tried it speak as well, please?

we did not have as bad of an experience as the one described. At BCH we were treated by doctors, one neurologist and one psychiatrist, who were willfully ignorant. Neurologist's advised us to sit tight and wait. It will pass. Psychiatrists offered Prozak -- while we wait, I guess. Nine months later nothing changed for the better. Things got only worse. I would go so far as to call this denial of service and would wish for a lawyer to get involved, not only a reporter. There were many reporters after the publication of Sammy's story and not much have changed at BCH. Knowledge is out there and they are responsible to acquire it. They can have doubts (and we want them to have doubts since that would keep them searching to understand Pandas/Pans better), but they should not deny treatment.

thank you for your replies. We tried magnesium last night and it seemed to have had a positive effect. I hope it continues.

Mi smo imali nesto uspeha sa NAC (n-acetylcysteine), gluten-free dijetom, i ribljim uljem. sve najbolje! petar

For those of you who had experience with Restless Leg Syndrome (RLS) and Pandas -- what worked? what medication? what diet? what didn't work? My dd8 is now on penicillin and some of her Pandas symptoms have improved. But her RLS seems to have become worse. She has dry eyes and some anxiety going to sleep. We use melatonin 3mg to fall asleep. She is also on NAC 600mg in the morning.