"Brain nutrients" for PANDAS recovery period?

[Chemar]

Mike

 

Ronna and Alison are likely the best ones to answer this for you as they have been dealing with PANDAS in their children for some time now

 

If I recall correctly it was a continuous rollercoaster till they had the full course of azithromycin followed by prophylactic use

[ad_ccl]

you are right Chemar.

Previous to azith we have been on full antibitotics for about 5 months after the initial onset - then prophylactic amoxycillin for 2 years - we thought he was doing ok - so much better than at the beginning so we were happy - but when we went off the amox he deteriorated terribly and when back on amox it did not help anymore - tried many other antibiotics over the course of about 4-6 weeks, no real improvement - then as a last resort tried azith - tics were 100% gone by the end of the full dose run and we have been on prophylactic dose since September - he is mostly symptom free and when he does have symptoms they are mild - no emotional lability anymore either.

not 100% symptom free all the time but the symptoms he does have no one would notice but me and they coincide with viral illness or too much playstation (we now limit to weekends only and time limited)- and he is so happy which is really the most important thing.

Azith has been life changing for him and for all of us.

[faith]

I wonder if the amoxycilin didn't work anymore because, you know, they say that you can become resistant to antibiotics if used too much? I know when I was a kid, we used erythromycin all the time for sore throats and then after a while that one never worked for me anymore, had to go to something else. And as an adult was given Biaxin when I had bad bronchitis and while on it got worse and turned into pneumonia--that antibiotic probably didn't work on me. I was sick for a couple months.

 

I am curious to know if anyone has used azithromycin who is not dealing with the PANDAS issue. I wonder if it would work with tics in general, wouln't that be interesting? I keep thinking back to the time my son used amoxy for a supposed case of strep and the tic subsided within days. (testing showed PANDAS not to be the issue--titers were normal.)

 

Faith

[Chemar]

I am curious to know if anyone has used azithromycin who is not dealing with the PANDAS issue. I wonder if it would work with tics in general, wouln't that be interesting? I keep thinking back to the time my son used amoxy for a supposed case of strep and the tic subsided within days. (testing showed PANDAS not to be the issue--titers were normal.)

 

Faith

 

My son was on the zithromax (azithromycin) Z pack (5 day course) last year for an infection and we did not notice any particular change in his tics as far as i can recall....but then I really wasnt looking for such an effect and was just watching the infection rather than the tics