Quick question for you Rockstar PANS parents

[rjayne]

I read on this forum a few months ago that there were some genetic mutations that have been identified in PANS patients. I think I also remember reading that the exact mutations haven't been made public, because the research hasn't been published yet. I'm looking for the physician that made these discoveries.

I have a child who has opsoclonus myoclonus syndrome. OMS and PANDAS are shockingly similar in onset and symptoms, but OMS is significantly more severe in terms of physical, motor symptoms, and has the presence of neuroblastoma in the mix. We're in the process of having my daughter's genome sequenced and I'm interested in comparing any abnormalities that she has to those of children with PANDAS.

Thanks in advance for your help. I know I could have scoured the site for this info, but I'm having trouble searching the forum.

Best,

Rebecca

[kos_mom]

Wow! OMS is very rare. The best way to search the forum is to google ACN Forums and add whatever topic you are looking for.

 

The doctor in question is Dr. T. Go to the sticky thread on abbreviations and you will find his full name.

 

Best of luck.

 

Ko's Mom

[rjayne]

Thanks! Any ideas on where Cunningham or Swedo stand on the genetic thing?