Swedos study

[JoyBop]

Has anyone here participated in the ongoing NIMH study for PANDAS? I emailed her today hoping at least one of my kids can get in.

 

Can anyone tell me more specifics about the exclusions? My DS started CBT 3weeks ago and went off Prizac 5 weeks ago. He'll be starting intunive tomorrow. The study says no one whis started CBT in the past 8 weeks or had change in meds for at least 8 weeks. Dies that mean he might qualify 8 weeks after he starts a new med or dose?

[JoyBop]

Sorry for all the typos. I clearly need glasses for the tiny keyboard on my phone

[EAMom]

Have you seen this?

http://clinicaltrials.gov/ct2/show/NCT01281969

 

I think the study is almost full...

my recommendation is to call ASAP since even if you don't get in or qualify, you might get some guidance or good information.

[JoyBop]

Thanks EA!! I just left a message for the social worker. They are still recruiting and will take patients that discontinue meds and CBT.. I hope we get in!!

[JoyBop]

The social worker called me back and spent about an hour on the phone with me taking info. Im afraid we wont get in, but it was worth a try. I know the meds arent a big deal because they just have to be 8 weeks out. But I think that they think we have had too much success with antibiotics. I told her most of the OCD and panic attacks gone but we are left with intense motoric hyperactivity, rages, and all around behavioral issues. The social worker is going to present our case to Dr. Swedo on Monay and they will get back to me then.

 

In the meantime, I was going to start ds on Intunive tonight, although now Im not sure I should. Maybe I should wait until I hear back from them so I dont push our chances out farther.

 

Fingers crossed!

[EAMom]

Yes, I would wait on the intunive!