Right Board? - PANDAS

KatieMiami1220

Hello Ladies,

I'm not sure if this is the right board to post this on, but I'm looking for some help.  My twin step sons were diagnosed about a year ago with PANDAS.  They live in Cuba and the diagnosis was made by a doctor there.  I always thought that they had ADHD and a nervous tic.  My husband and I are trying to find resources here in the States.  Currently, the only "treatment" they receive in Cuba is being given benzodiapens to sleep.  I KNOW that we have better treatments and medications here, but am looking for an expert who will work with us without the children actually being here.  (Their mother lives in Cuba and refuses to let them move here for treatment.)

Can anyone point me in the right direction?

TIA

breezy0629

I've heard of a treatment of antibiotics. Other than that, I don't know anything. Auntie gives very sound advice.

I hope you find some answers. 

Update: I've heard of the antibiotic treatment, but it's probably similar to the biomedical side of medicine for autism. This is what's on the second link auntie sent you:

Q. Can penicillin be used to treat PANDAS or prevent future PANDAS symptom exacerbations? 

A. Penicillin and other antibiotics kill streptococcus and other types of bacteria. The antibiotics treat the sore throat or pharyngitis caused by the strep. by getting rid of the bacteria. However, in PANDAS, it appears that antibodies produced by the body in response to the strep. infection are the cause of the problem, not the bacteria themselves. Therefore one could not expect antibiotics such as penicillin to treat the symptoms of PANDAS. Researchers at the NIMH have been investigating the use of antibiotics as a form of prophylaxis or prevention of future problems. At this time, however, there isn?t enough evidence to recommend the long-term use of antibiotics. 

KatieMiami1220

Thank you ladies so much!  My husband is flying to Cuba this month to see the boys and to get copies of their medical records to try to take to a specialist here.  We are just trying to gather as much data as possible.