My son had IVIG in March of 2011, and after a long recovery from the IVIG, has had more than two great years. Unfortunately, this winter has taken its toll, and PANDAS symptoms are back (mostly anxiety, obsessive fears, and some defiance).
I am really struggling because the physician who was treating him is no longer practicing medicine, and since I thought this was behind us, don't have a physician who understands PANDAS who is willing to write a script for antibiotics. His throat doesn't hurt and he likely won't test positive for strep, so I can't get a script from urgent care.
Until I can find a physician, I need to keep him as stable as possible. We are doing Benadryl to bring down histamine, Motrin for inflammation, and are upping his prophylactic penicillin (we had backed off to one daily instead of twice).
Are there any other supplements that I can use until I can get my hands on a script for Zithro? He currently takes GABA, magnesium, Inositol, and Olive Leaf Extract.
Has anyone else been in remission that long after IVIG and then PANDAS came back? Was it hard to get them back to normal without another round of IVIG? My son is old enough that he knows what's happening to him and it is VERY hard for him emotionally to have the PANDAS symptoms back.
Thanks, Sara