Hi everyone,
I'm new to this board...I've been reading your threads for a couple weeks & joined today.
We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.
Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.
But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.
He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.
In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.
The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.
Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.
I am elated!!! Someone gets it. Someone is going to do SOMETHING.
I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.
Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??
She offered me Risperdone and/or Clonadine and sent us on our way.
Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.
ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds
