In Person Support Group

[zazuk2010]

I live in Los Angeles. I have twin 5 year old boys with PANDAS. If there is anyone who lives in LA who would be interesed in forming a local "in person" PANDAS support group with me please let me know and I will find us a place to meet.

 

Best, Kari

[momtocole1]

Yahoo, a PANDAS friend in LA! Dear Kari, I live in So O.C. I know I am a bit far away from LA but I am so glad that you posted. If you have others that you find in Southern Cal from your request I would not mind making the drive up there to be in a support group.

 

Even more importantly, Do you have a PANDAS doctor? Can you tell me more about your boys. I have twins too! I can't find anyone in OC who has successfully treated children with PANDAS. We are going to see an immunologist at UCI on November 4th and we are doing a phone consult with Dr. K. next week.

 

Currently we see a DAN doctor but he has little experience with PANDAS.

 

My heart goes out to you with two little ones with PANDAS. My twins do not have PANDAS, I have a boy and a girl, they are 7. My little boy, Cole has Down syndrome and my daughter is typical. It is my older son that has PANDAS, he is 12 next month.

 

I can't wait to hear if you have a doctor that you are happy with. I can drive to LA in 75 minutes and it would be well worth the drive. My son has way too much anxiety and OCD symptoms to be on a plane.

 

Thanks,

 

Judy...

 

 

I live in Los Angeles. I have twin 5 year old boys with PANDAS. If there is anyone who lives in LA who would be interesed in forming a local "in person" PANDAS support group with me please let me know and I will find us a place to meet.

 

Best, Kari

[T_Mom]

Great idea to start a support group--regretfully we are east coast...

...it is a parent support group--right;) ?!?

[zazuk2010]

Yes, I am not a theripist just another parent dealing with all of this. I was thinking that if there is interest, I know something about setting up a web site and I could put together something that would alllow parents to connect with each other in different areas. People can there share local resources and find comfort in knowing there are people nearby that really understand what they are going thru.

 

Any thoughts about this idea? ???

 

Kari

[dcmom]

T Mom and I are in the DC metro area. Is there anyone else close enough to us to consider a support group? We could also meet with those who come in to town to see Dr L...

 

Eileen