Reply To: PANDAS

Thanks for your support. I’m curious what you have to say Health, but as I write this your comment is still in moderation.
BigDeal and Daniel, The Dr is the female pediatrician from Brooklyn’s daughter, the protocol is the same. I was nervous approaching her, since as my pediatrician pointed out, a big believer in PANDAS has a bias towards that diagnosis. But when he came down with his second round of strep in 2 months and his Dr treated it with the antibiotic of choice for PANDAS, and he markedly improved within a few days of starting treatment, I started to believe it was PANDAS and contacted the expert.
We have not gone the psychiatric route yet- I was about to pursue that and was investigating names of Drs when he started the antibiotics and finally showed signs of improvement, so I have put that on hold.
He has not had blood work now, but had extensive testing done last year when he also showed signs of PANDAS. Strep titers were high, but all that told us was that he had had a recent strep infection, which we knew. No signs of inflammation/autoimmune antibodies at that time. I was told that the more accurate test, the Cunningham panel is not available in E”Y.
It is hard to trust instincts. I thought I was doing him good by giving him this probiotic- which is important when taking antibiotics, especially longer term, and is helpful in building up immunity, which I thought was good for him since he is always getting sick. Even consulted with the pharmacists, who is a bit of a naturalist. But after his reaction on shabbos, I did some more reading and found out that probiotics- especially those that contain benign strep strains like the one I bought, can trigger symptoms, and the last thing PANDAS kids need is something that boosts their immune system.
Daniel, how long was your daughter on antibiotics? What supplements are good for PANDAS kids? I’m giving him vitamin D. Don’t want to bombard him with too much, because I am afraid he will balk at taking anything.