Stand Firm! You are a great Mom and one thing I know about us PANS/Lyme Moms, we do not quit! Keep on, day by day, working through this. IT WILL GET BETTER! There isn't a single person on this board that has been stuck forever - some days up, some months down, but we are not stuck forever. She will get better! You will know when to do what.
I have two kids and they both have done intensive CBT/ERP with Storch and group. One was very successful as her thoughts traveled with her. The other, was not as his thoughts didn't travel and they couldn't replicate them there. Both are PANS and Lyme. We do monthly IVIG. Some months it quiets us way down and other months it will stir it up. Tindamax was a big culprit in stirring things up but we stuck with it for 2.5 years in one kid and a year in the other. Stopping it doesn't necessarily return you to where you were. In my daughter, we had 8 GREAT months, stopped lyme meds to give gut a break, kept only Amox XR, and she has crashed back to pre-treatment stage. But, we got her back to 50% by increasing Amox XR. Before, to gain 50% would have taken months instead of days. Yes, the crashes are hard, but I know we will one day rebound. I have to hang onto that.
So, it's a long slow healing - it is not quick! You are running marathons! She is so fortunate to have you as a Mom! Not to mention the blessing they are to us - don't they make us stronger and better than we ever thought we could be?
dcmom,
I'm SO glad to hear your daughter is healed! I have spoken with Dr. Storch, and he is a very nice man. He did say our situation is not ideal for Rothman, because she seems quite normal outside of our town. Other people do not notice much in the way of symptoms when they see her out and about, and indeed, she doesn't suffer them (very little anyway) when she is away - yes we have thought of moving! The tough thing is there is not way to bring our town and all of its contamination to Florida with us... We have decided to finish the second IVIG and then head there in November. In the meantime, Dr. Storch has given us a recommendation for a CBT practice 1 1/2 hours from our home, (we are in a remote area), and we hope to begin and finish the psychological process there. This is such a debilitating disease, for entire families.
How long has your daughter been well now?