Pandas symptoms?

[porkchop]

Hi,

Im looking for advice on my 11yr old who has strange behaviors and possible pandas. Does anyones child have a sort of cycling to their symptoms? Every 3 mths? Does a cold trigger the pandas flares? My dr. said my son had "epileptic spikes" on his eeg, but didnt say he had epilepsy? Do pandas kids have abnormal EEGS? Does anyones pandas child sleep alot during a pandas flare? My son has a very hard time getting up in the morning and wants to lay in bed all day. What about chewing on clothes during a pandas flare? He chews holes through his shirts, and he is eating pennies and toilet paper and any other non food item he can get a hold of, but when he comes out of these "episodes" he doesnt do any of this. He is pale, almost gray looking and severly fatigued when this happens. I also feel these "muscle twitches" that go on all day long whne he is laying down and sleeping. We had been working with a dr. who did 2 rounds of IVIG and IV steroids and then put him on anti seizure meds becuase he thought he had pandas and KLS. He went 4mths with out any problems and we though he was cured, then on day he had an eye exam and they dialated his eyes and put drops in them, and then the next day he woke up "sick", so the dr. thought it was seizures. He had Anit Dnase done it was 400 and ASO was in the 500 range, so thats why we did ivig, but he has never had a positive swab. I think my dr. has given up trying to figure this out, but I cant give up on my child. There is something wrong with him and it seems to me everything keeps pointing to pandas. We live in Maryland and I am interested in finding a good pandas dr. in md or delaware or virginia that accepts blue cross or medical assistance insurance. Dr. Latimer does not take our ins. and I have no way of coming up with the money to pay for a visit. Any info would be greatly appreciated, this is really taking a toll on our family.