PANS article

[Hrosenkrantz]

Hi -- I know news stories about PANDAS/PANS usually make it to this forum, but i havent seen this one, and a relative forwarded it to me, so passing along

http://philadelphia.cbslocal.com/2014/06/10/health-mysterious-brain-illness-causes-terrifying-outbursts/

[PowPow]

Good article about stanford-- but those comments! Are they for real??

[Missmom]

Thanks for sharing

[BeeRae22]

Good article about stanford-- but those comments! Are they for real??

Ugh... The comments are just ignorant, and awful. I thought the article was a little rough as well, and found the reference to "the blood test for PANS" very frustrating! (Okay, I had to deal with a rage episode with dd this morning about the slew of bloodwork we had to do! I may be a little sensitive to the issue!).

[qannie47]

The comments: Honestly, they all seem like a group of very angry people. I hope none of them have kids.

Edited June 11, 2014 by qannie47

[nicklemama]

Come on now, the comments at the end were most entertaining, lol! References to Obama, vaccination, demonic possession. It runs the gamut. I was quite amused.

[qannie47]

Ha

[MMC]

I just read the article. It's the first time I remember seeing documentation of an autoimmune blood disorder, "We discovered that he actually had an autoimmune disease attacking his blood and blood vessels,” explains Dr. Jennifer Frankovitch".

 

Sounds similiar to what the docs at Duke found in DS15 end of last year. They found an antibody attacking his platelets. His platelet count was always low and this is why. He always bruised easily. I can't remember the name of the antibody or condition they called it, but kudos to Dr Van mater, Duke pediatric rheumatology for finding it. This antibody gave them the proof they needed for an autoimmune problem. They then prescribed 4 rounds of monthly IV steroids. Steroids worked wonders, so they started cellcept 2 months ago. We continue to see improvements...school is better, personality is back, OCD is lower, ADD is lower. Tics are still there, but less severe. The steroids and cellcept have helped him better than plasmapheresis or IVIG or Abx have.