Hi all. Well it has been a long time since I have posted. We have seen most of the NY/CT area well known Lyme and PANDAS doctors. DD is now 13 and we have moved to Cherry Hill, NJ area. DD was diagnosed with Lyme and PANDAS five years ago. After much improvement, for the past two years we have been treating her essentially only psychiatrically, keeping her on Lexapro and nothing else. Her psych symptoms (hallucinations, OCD, anxiety, depressions) prompted me on yet another search and I was able to find an ILADS psychiatrist in PA. She did Cunningham test on DD and it came back with 3 elevated markers, one borderline marker, and one close to the border. I should mention that psych changed DD's meds to Pristisq and mini dose Abilify and we have had DRAMATIC improvement. Based on previous Genomind results we should have done this long ago but anyway no time for Monday morning quarterback right? DD is incompatible with Lexapro.
Psych (who is also Internal Medicine) is recommending IVIG and I think I am finally ready to try this. Psych believes it is Sydehams Chorea, which by my recent research seems entirely plausible. DD has all the psych symptoms plus is extremely clumsy, always knocking things over and has lots of trouble with movements. Initially I did not research this syndrome because DD did not seem to do the jerking movements described, however looking back, based on symptoms and her clumsiness I am beginning to think it is entirely plausible.
I know we need to hydrate, use advil, benadryl and infuse slowly. Wanted to ask for:
1) Brand advice, which are the best filtered brands?
2) experiences - anyone with similar Cunningham results, did this work for you?
3) anything else?
4) local PANS docs, I have considered going back to our CT doctor but it is far. Would like to have someone else on board through this process. Our pediatrician is awesome and very supportive (even told me he ordered a Cunningham test for one of his patients) but I am not sure he would agree with the IVIG so it would help for me to have someone local.
thank you to all <3