NIMH website getting updated

[EAMom]

http://intramural.nimh.nih.gov/pdn/web.htm

[browneyesmom]

It updated last night!

[colleenrn]

I am glad to see they talked about getting a good sample when doing a swab. I am also very happy they said a negative rapid must be followed up with a culture b/c rapids miss 10-15% of strep. BUT, I don't understand why they did not specify that the culture be run for 72 hours. It was Dr Swedo herself who told me to always insist on a full 72 hour culture b/c running it for less will can also result in false negatives.

 

Colleen

[Kayanne]

Is there only that page? I couldn't see "next" buttons and it didn't seem complete. Did I miss it how to get to the second page?

[mkur]

"Because it is so difficult to demonstrate the relationship between the child's OCD/tic symptoms and strep infections at the first onset of symptoms, clinicians and researchers agreed to focus their attention on the unique features of the clinical presentation of PANDAS, rather than on the role of strep infections, and developed criteria for PANS – Pediatric Autoimmune Neuropsychiatric Syndrome."

 

This wasn't my child's problem but I am so glad to see this. I also noticed that they don't mention tonsils - awesome.

[philamom]

Is there only that page? I couldn't see "next" buttons and it didn't seem complete. Did I miss it how to get to the second page?

Same here. There's only one "frequently asked questions"???

[EAMom]

Is there only that page? I couldn't see "next" buttons and it didn't seem complete. Did I miss it how to get to the second page?

Same here. There's only one "frequently asked questions"???

 

Yeah...I don't think they're done yet.

[missjo]

It looks like the full page is there now. So glad to see IVIG and Plasmapheresis is listed as treatments. Yeah!!!!!

[JAG10]

Can someone explain something..... When they are comparing penicillin vs Zith, I get the left of the line vs the right of the line, but what does the height of the line indicate?

 

Are they saying the kids on penicillin had less non-strep, but still illness related exacerbations than the group taking Zith? Why would that be?

Edited February 24, 2012 by JAG10

[T_Mom]

Wonderful Update --

 

Thank you Dr. Susan Swedo.

Thank you NIH!

 

Our children thank you and future families should thank you--this update should make a tremendous difference in the lives of many children in the future--

[PowPow]

This is wonderful. Thank you Dr Swedo and the July 2010 research group!

Also- one thing I noted (maybe just a little slip?) But in the article, in the first paragraph on PANS - it is described as Pediatric Autoimmune Neuropsychiatric Syndrome. Otherwise, throughout, it is described as Pediatric Acute-Onset Neuropsychiatric Syndrome.

Interesting little typo

 

Love it, though.

 

Wish my family doc had email and I send the link to him!

[eljomom]

mkur---why are you happy about no mention of tonsils? curious....

 

 

"Because it is so difficult to demonstrate the relationship between the child's OCD/tic symptoms and strep infections at the first onset of symptoms, clinicians and researchers agreed to focus their attention on the unique features of the clinical presentation of PANDAS, rather than on the role of strep infections, and developed criteria for PANS – Pediatric Autoimmune Neuropsychiatric Syndrome."

 

This wasn't my child's problem but I am so glad to see this. I also noticed that they don't mention tonsils - awesome.

[eljomom]

still bugs the tar out of me that PANDAS is "onset of ocd or tic disorder" while PANS is just "onset of ocd." It's like they are still saying that the ONLY thing that can cause an abrupt onset of tics is strep.

[mkur]

"mkur---why are you happy about no mention of tonsils? curious...."

 

Because they did not recommend removing tonsils before and this stmt made it impossible for me to have my ds's removed.

 

This has been debated many times on this forum

example: http://www.latitudes.org/forums/index.php?showtopic=4524

[norcalmom]

still bugs the tar out of me that PANDAS is "onset of ocd or tic disorder" while PANS is just "onset of ocd." It's like they are still saying that the ONLY thing that can cause an abrupt onset of tics is strep.

 

someday they will figure out that you can't be a subset of something that does not include your definition in the first place. PANDAS - can be tics only, PANS cannot. So, how can it be a subset?