Luna2

Hi - Our dd 12 has had sleep issues for years that are much worse with PANDAS. I try to give her the most natural stuff first. She has many eating issues since PANDAS so things need to be easy to swallow and good tasting. Most nights I use Yogi Bedtime tea with a dropperful of Eclectic Institute Chamomile & Catnip tincture in glycerine (tasts sweet and minty and goes well with tea). Finally, I add honey. That is step #1. If that doesn't work, I go to melotonin 1-3 mg. depending. If things are still reving up I add a back rub with a magnesium massage oil that I made. Finally, I resort to clonipin or benedryl if she is still bouncing off the walls. I try to start early with the tea or melotonin but sometimes it just doesn't matter. Dd sees monsters when she is really flared up and then it is clonipin time. We have a pad we throw on the floor in our room that she can sleep on. Any other natural remedies out there?

Hi - In San Francisco East Bay, we have seen: Herb Schrier MD(Psychiatrist) at Childrens Hosp, Oakland. He supported antiobiotics with pediatrician. Has seen several PANDAS children. Recently has 4 more PANDAS cases. Has been very helpful and flexiblewith treatment strategies. Supports IVIG although we do not have referral yet. Katherine Martinez, Psychologist, CBT/ERT. Excellent. Is on leave from practice in Oakland. Was helpful with eating issues. Denice Killingsworth, OT, Walnut Creek. Wonderful with sensory integration/reintegration. Was helpful with eating issues. Marianna Eraklis MD, behavioral pediatrician, in Orinda. Very supportive and knows a little about PANDAS. Just started working with her.

I am going too and would love to meet.

My daughter is 12 yo and was dxed with PANDAS at 8. I looked at her lyme's test from her first year of illness. Her band 41 IGG and IGM were reactive. She had a tick bite about 2-3 months prior to her first PANDAS episode. I tested the tick through our local vector control and was told it was not a lyme tick. Who knows. She also had reactive !GG bands 58 and 63. Does this indicate lymes to you? We are seeing 1-2x/yr. Dr. Herb Schreier at Children's Hospital Oakland (CA). My e.mail is joanne_genet@yahoo.com Thanks for your postings and work!