PANDAS frustration

[Lotusgirl71]

Good Morning - New to this site but excited to see talk on PANDAS.

My son is 8 and after Strep in July of 2006 he developed sudden onset of tic, odd, adhd, anxiety, extreme fear .. etc..

After fighting with Dr's I finally had him tested and he tested positive for strep [ again with no symptoms] and extremely high titers. Round of antibiotics and a dramatic difference and relief.

However that is as far as we have gotten. My son struggles daily - we are trying a new ADHD med and he has been on Prozac since the initial dx. I do not want him on the prozac anymore I feel it is a negative impact and it making matters worse the Dr refuse to take him off it due to the tics [ 2 verbal that are now gone] .. However my son is really defiant and it is severly impacting school.

I also want his titers checked again but they won't do it - I know they are high even if he tests negative for strep.

I am also wanting to know more about this Steriod burst and IVIG

I am desperate - Especially if PANDAS can be cured by either one - why won't NIMH acknowledge??? I rezlize there are risks but there are risks with everything. In addition to that their studies on IVIG with PANDAS were all successful with amazing results.

 

Can someone help me ? I feel like I am alone fighting for my son and no one will listen.

 

Thank-You

[kkver]

Sorry to hear about your kid. The key is find a doctor who is willing to listen to you and avoid the medicines meant for neuro disorders. If antibiotics makes it better then he should go on antibiotic though i don't like long term use of antibiotic but if you don't have choice then you will have to go on it. Try calling, emailing Dr Tanya Murphy at Shands in florida may be she can explain it to your doctor or if you can go there she's the best out there on PANDAS.

 

http://www.shands.org/