PANDAS- Interesting article regarding antibiotic prophylaxis with Azit

[CKJ]

Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders

 

 

The link is below (its a PDF file so I couldn't copy or paste it here). What I found interesting is the last paragraph - just read that if you don't want to read the whole article - Speficically the last two sentences - My dd was having problems with the penicillin (Augmentin to be specific) so we were going to request changing to Azithromycin. I've seen several mentions of Arithromycin here - if your child is taking it are seeing good results and how long have they been on it?

 

http://intramural.nimh.nih.gov/pdn/pub-9.pdf

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Hi CKJ,

This is a good thread to start as we may see a pattern of positive results with azithromycin.

 

My son has been on it since the last week of August - we have seen amazing results. 100% symptom free at the end of the course - we actually stayed on for a full 12 days as he was starting school and we wanted him to be stable ( he was symptom free by probably day 7 - and mostly symptom free by day 2-3. We then went to 500mg every 5 days - he has been doing better than he has since this beginning of our experience with PANDAS - 2 years. He seems to be improving as time is passing. Initially we would see some symptoms (mild) the day before, the day of, and the day after the antibiotics. These symptoms have decreased and now we do not see them the day before, only the day of and day after - actually this week it was the evening of and today is the day after and there are mild symptoms - no one else would notice.

 

It has changed our lives - he is so stable, full of life, full of energy, not moody, not emotional, on such an even keel - it is not just the tics that have improved but overall he is so much happier and healthier - willing to do homework etc. I was saying this weekend how it has changed the whole dynamic of our family - now we have three healthy and happy boys. We are able to do family activities we couldn't before as too much exertion caused an increase in tics and we were so afraid of any damage to his brain.

 

Prior to azithromycin we were on amoxycillin for almost 2 years prophylactically - until we went off in July to see how he would do and he ended up having a vocal tic every second for most of the summer - we tried several antibiotics before trying azithromycin as our last resort - after I took in this article to my doctor. By day 3 he was 99% better.