I wonder how many of these kids have PANDAS

[EAMom]

NY times article:

 

http://www.nytimes.com/2009/12/12/health/1...nted=1&_r=1

[dut]

Very many I believe....

 

I know I've posted this before but I can't get over what my mother in law said when our dd 1st had PANDAS and I asked if she had seen it in family members. She said no to the family but (she was an elementary scool teacher and principal for 20+years) each year her school's intake was 28 or so kids (small school in England) and out of that group they would have 2 kids a year without fail that would develop sudden onset fear of contamination and handwashing and sometimes ADHD type behaviours. It would last 6 months or so, be put down to family stressors etc and would resolve. Sometimes the ADHD behaviours remained, usually in the boys.

 

This is far from rare in my opinion.

[EAMom]

And if you're a kid on Medicaid...your parents aren't going to know any better to question a doctor (not that the docs would listen) when they rx out the anti-psychotics.

[peglem]

And if you're a kid on Medicaid...your parents aren't going to know any better to question a doctor (not that the docs would listen) when they rx out the anti-psychotics.

I'm not on medicaid, but my daughter is (as her secondary insurance).

 

I think you're seeing a lot more special needs kids on medicare, because that's what many states use as a DDD insurance. That's why we have it, in addition to our regular family policy. Many do have it as only insurance though. And with special needs kids there is a lot of pressure from schools to get behavior straightened out. I know schools aren't supposed to do that- but there are many subtle ways- and not so subtle- The last school (private special needs- specializes in ABA) actually contracts with a consultant to talk to parents about pharmacological "therapy". So, parents who will get fired if they have to keep missing work to pick up their child from school, etc...finally give in and try. That's what I think is going on.

[peglem]

I should add, too, that our experiences with psychiatrists who accept medicaid payments was pretty miserable- they usually didn't stick around long (as medicare providers) so we had a constant switching of doctors-I think medicaid does not pay as well as they can get elsewhere. I'd given up on psychs altogether, when I was shown the door by one who didn't agree with me on what to try next (what is it with that d*#*! risperdal, that they're so sold on it?). Allie's pediatrician found me one that is not a medicaid provider, but is still paid through them. Medicaid mental health services are contracted out to a private company here- which keeps changing as well, but the providers I'm referring to were working for the contracted company actually.

[smartyjones]

disregarding the medicaid issue - i wonder how many kids in general with behavioral issues have PANDAS!

 

my son's presentation has been totally difficult behaviors - basically ODD and school phobia. not knowing him, you'd think he was simply a defiant little brat if you saw him in an episode. only now, 1 year later, do i question if some things could have been ever-so-slight tics.

 

our ped office had a 'behavior specialist' who suggested meds at the first consultation w/o even seeing him. she suggested the next visit for a full check up to approve him for psych meds - which certainly would NOT have include titers or a strep culture. had i not thought that was a ridiculous first step for a 4 year old, we would have been on the psych medication wild ride. only by the grace of an in-tune behavior therapist did we discovered pandas.

 

whenever i think about it, it's insane that we don't first check out all medical possibilities before putting kids on meds.