Rheumatic chorea

[EAMom]

Hi Claire....I'm so happy that your son is doing better!

[acdrobert]

Carter continues to improve on Azitnromycin but I am trying to get a plan in place if things start to relapse. I spoke with Harvey Hamrick,M D who is the chairman of pediatrics at UNC and he referred me to Eliana Perrin, MD who is on faculty has done some research with Swedo. She e-mailed me today and said she had a fair amount of clinical experience with PANDAS and she would be happy to help guide me through our treatment. It is nice to know she is in Chapel Hill and just 1 1/2 hours away. I sent her our timeline of symptoms and we will have a phone consult soon. I will keep everyone posted on what she says.

Claire

 

 

Claire - Could you keep me updated on your son's progress and your experiences with Dr. Perrin. I live on the other side of the state from you in New Bern. My son got diagnosed with PANDAS in Jan '08 when he started abruptly ticking and had a high strep titer. We were intially treated in Greenville. My husband is an MD and had some ties there. After a year on neuro drugs with no improvment, we decided to seek out some IVIG therapy. We could not find anyone in NC so we flew to Chicago to see Dr. K. Our son Thomas is much better. Like many parents on this board we have seen not completely smooth sailing but Thomas' tics have mostly stopped. We have seen a few irregular strange tics but his separation anxiety has disappeared and the ADD symptoms have improved.

 

Anyway I would really like to have a MD in NC that could treat us. Please tell us experiences with Dr. Perrin and anyone else you have contact with at UNC

 

Many thanks

 

Anne Robertson