NIMH/Dr. Insel's New Blog Post

[thereishope]

From Paresis to PANDAS & PANS

http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-pans.shtml

[PowPow]

Thanks for posting this, Vickie.

I would love to meet Dr Insel in person and thank him someday. I know he cannot solve all the PANS mysteries, but just reading his posts about it give this weary parent some peace and hope.

[MMC]

At the bottom of the article, there is a picture of a brain MRI and it shows a decresase in size of the caudate, which is part of the basal ganglia. I had never seen this before...does anyone know if this is from the new trial they are doing? I thought the inflammation was more at the neuron level and could not even be picked up on an MRI. This looks like good proof, that IVIG works, or can work in some cases. We will need proof like this, for insurance to pay more on this in the future. And for docs to accept PANS as a proved diagnosis.

[MomWithOCDSon]

At the bottom of the article, there is a picture of a brain MRI and it shows a decresase in size of the caudate, which is part of the basal ganglia. I had never seen this before...does anyone know if this is from the new trial they are doing? I thought the inflammation was more at the neuron level and could not even be picked up on an MRI. This looks like good proof, that IVIG works, or can work in some cases. We will need proof like this, for insurance to pay more on this in the future. And for docs to accept PANS as a proved diagnosis.

 

MMC -- I have seen this slide in Swedo's PANDAS presentations/speeches that she's given in various venues. It was in her AO Conference talk a couple of years ago, and I believe it appears in the MindInstitute video on-line, as well. As I recall, this was of a young boy who was among her first treatment subjects, and he was treated with PEX.

[MMC]

Ahh...PEX, not IVIG. Either way, it is quite convincing. Our DS had PEX and it helped way more than the one IVIG (which was actually followed after PEX). But, the symptoms came back very quickly, after the flu. maybe we should do PEX again...but, if the symptoms come back within a month or two, it is not worth it.

[dcmom]

MMC- we did pex for my daughter. She also got the flu (probable H1N1) about a month later. We gave her tamiflu instantly. Within 24 hours of her fever normalizing, she started spiraling quickly into a pandas episode. Within 48 hours of that, we gave her a month long steroid burst. She was back to about 95% remission within 2 days. I think pex is awesome, and would do it again in a minute- but our docs have to be aggressive in managing pandas after any of these procedures.

[mkur]

Thanks for posting. I wish to thank the NIH and all the children who participated in the study and their parents. Wish we could have been a part of the first study. Thank you all from the bottom of my heart. Finally some answers. I'm definitely smiling between all the tears.

[fightingmom]

Thanks for posting. I wish to thank the NIH and all the children who participated in the study and their parents. Wish we could have been a part of the first study. Thank you all from the bottom of my heart. Finally some answers. I'm definitely smiling between all the tears.

 

 

DITTO!!