I feel like the only one doing antibiotics alone for treatment

[TiredMom]

"Is anyone else just using antibiotics to try and treat this. My son who is 12 is on his second course of zithromax. 3 months later and the H1N1, things just seem to fester. Of course the flu did not help, but I wish I could do ivig. Is anyone else waiting this out and just trying antibiotics. I do get encouragement from the Saving Sammy story. I am so scared that this is not going to resolve itself and my son has to endure symptoms he shouldn't."

.

 

We're in the same boat as you, although we are meeting with an Immunologist soon to discuss the possibility of IVIG. My daughter has had 3 major PANDAS episodes. One when she was 6 1/2, which we've only recognized as clearly PANDAS in hindsight, then one at 8 1/2 with a reoccurring viral infection, and then at 9 with Fifth's disease. Throughout this time, she retained "quirks" that I feel was something like a low grade infection festering that did not allow her to go back to her baseline. About 1 year ago, we started antibiotics and a steriod burst, and saw immediate improvements, but have also had slow, steady improvements on top of that that made me feel like the antibiotics had done their job, then the brain was healing. She's very good now, however, once in a while I'll see a behavior break through and assume she's been exposed to something, and she's fighting it. I've tried reducing her antibiotic dose 2 times, and her mood and behavior worsened both times - so we're keeping her at 250 azith. She's about to turn 11, and weighs 90lbs. Her CamK number was 144 in September. I'm haunted by memories of her worst, unbearable times, and pray that she'll never suffer like that again. I feel a heavy responsibility to make good choices for her now that we'll all have to live with. I wish we had crystal clear criteria for when to do which treatment... Dr. K has indicated that he believes IVIG becomes ineffective after puberty, but when I spoke to Dr. Latimer, she didn't feel that was the case. I'd feel better if I could be sure I wasn't running out of time for IVIG to be an option....