Did your son/daughter develop a SUDDEN onset of movement disorder in t

[laurenjohnsonsmom]

Did your son/daughter develop a SUDDEN onset of movement disorder in the last 6 months?

 

Was there..

 

a) first exacerbation or a subsequent exacerbation but with more extreme movement than the previous exacerbations.

 

If this describes your situation we need to hear from you! This can be with or without anxiety/OCD symptoms but must include movement.

 

We are working with some folks who are particularly interested in this subgroup but have a time-sensitive deadline.

 

Please send me a PM or send us an email at info@pandasresourcenetwork.org with a brief summary of your story/history as soon as possible. Thanks for helping us help other families! -Lynn

Edited February 1, 2012 by laurenjohnsonsmom

[laurenjohnsonsmom]

BUMP...

 

Thank you to everyone who has participated thus far!

 

[eljomom]

Can you please share what this is for? I know we are past our "sudden onset" but this definitely fits us. We are, as of today, having a sudden increase from a couple to over half a dozen tics/movements again, and really curious what study is being run. By whom? It doesnt' sound like the NIH study as they were more interested in OCD.

 

BUMP...

 

Thank you to everyone who has participated thus far!

 

Edited February 13, 2012 by eljomom

[Bill]

We do not fit the last 6 months criteria but when this started years ago for my son, movement disorder was a very large part. Sudden depends on your definition though. My son had what I guess could be called a slow ramp up with noticeable symptoms in the summer time frame (years ago) to holy crap he's going to need a wheelchair if it gets much worse by February. Diagnosed for years as generalized dystonia.

 

That's my long winded way of saying "Whatever this is about, I would love to hear the outcome!"

 

Thanks, bill