NIH Post About PANDAS!

[lfran]

AWESOME!!!

[T_Mom]

Incredible -- and from Tom Insel himself, this is huge.

 

I am almost too moved to write anything here -- YES to all said above -- finally...

 

Doctors, Moderators, Pandas parents, thank you, thank you, thank you--

[Diana]

Thank you very much for finding this Vickie. I hope our network of parents can assist in encouraging NEW ONSET pandas cases in participating in the study. My understanding is that they will be focusing on Severe Onset cases. The naysayers have viewed many of the severe onset cases videos of children and are sufficiently alarmed to agree that this type of study is needed. Terrific!

[melanie]

Does anyone know what dosage of IVIG they are planning???

[Luna2]

Finally, NIMH is beginning to catch up to our PANDAS forum. It is all of us, this incredible cyberspace parents group, that has created change. Thank you for being there. I try not to imagine what would happen to our children and all of the other children without this determined, creative, caring group. and thank you ACN.

[norcalmom]

If anyone hears what tests and protocol for the ivig and antibiotics they are using I'd be very interested!

[norcalmom]

If anyone finds out protocol for ivig and antibiotics the will use in the study, and what tests they are running, please let us know!

[tpotter]

Did you see the part about increasingly vocal parents???

[thereishope]

Also, it does state that the research will involve antibody identification too. If you click on "Bench to Bedside" it states that Swedo, Leckman and Cunningham are those heading the research.

[mama2alex]

I cried when I saw this post. Thank you for bringing this to our attention Vickie! I can't wait to show our pediatrician.

[saidie10]

This is so amazing!!!! I can't wait to pass this on to all the doctors we have come across who say they must practice "evidence based medicine". I can't wait until every child that walks into a pediatricians office presenting with PANDAS symptoms test for strep and investiages it further instead of sending them on the Neurologist to get on psychiatric medication! This is one step closer to that for sure! BRING IT ON!!!!!!

[airial95]

This is a great way to start a Monday!