No, I’m sorry I haven’t. My son has been going through what seems to be PANDAS, too. We live in Baltimore, Maryland. He is 11, and has all new (past ~3 months) severe separation anxiety, intrusive thoughts, great sadness & crying a whole lot, coughing tics, cognitive decline (he was going into “honors class” in 6th grade, but only made it through first 3 days, & then all of this struck him after being sick with what I thought was a cold for several weeks). He cannot go to school (debilitated). Our ped doesn’t “buy” pandas, even though it was that dr office that confirmed he had strep with quick swab. His MRI showed something concerning: (T2 hyperintensities in biparietal subcortical white matter). Currently on Azithromycin after being on Augmentin 2 times, 3 weeks each. While he is doing better now after being on that (by the way, a wonderful neurologist, Dr. Shafrir, placed him on the Augmentin & I’m sure that is what helped him get this far), he still has extreme separation anxiety from me. I cannot go to work. His great sadness has improved, and his cognition is slowly returning. Still has intrusive thoughts and tics along with stomach pain, and constantly wants to be distracted with youtube or video games.
Have you ever heard of LDI?
I want to look into that, but I know it is relatively new. I’m going to check into it. I’m a little hopeful.
TBB plus or OCP I have not heard of, but am curious. Also, have you heard of SPM? Something like “specialized pro resolving mediators” only one company makes it. Metagenics. I believe that is used once inflammation is already in control. So, later to prevent flare ups.
Dr. Shafrir also wants him on prednisone, which I have been fretting about. I will do it though, if need be. I had to wait on the prednisone until his 2nd set of blood work was done (4-6 wks later). (A NP in Roland Park suggested that one, because blood tests can be influenced by prednisone). I am waiting on those results.
Hopefully NP Kayleen Clute will lead your daughter in a healing direction! My NP doesn’t know much about PANDAS, I don’t think, but he is really trying to piece things together. Is Kayleen known for helping w/pandas?
All the best to you! I truly wish you well.