First off, I don't want to frighten anyone. My DS14 had an MRI referral when a traditional doc didn't know what to do(except wanted to mask symptoms with meds)when I told her of his symptoms- ocd, depression, tics, loss of math skills, emotional upset, and on. In the meantime, found a fabulous doctor in Columbus, Dr. Lewis, and started treating his infection(s), plus adding supplements for under-methylation (gene mutation), low D, Pyrroles, etc. He has had great results so far.
I still had the MRI scheduled (took 8 weeks)and thought what the heck, let's see what the MRI shows...a 7mm lesion on his basal ganglia. We are beside ourselves.
There is little, if any, research about long term damage caused by PANDAS/PANS. Anyone have any similar findings? Know of any new research?
We are taking this one day at a time. The Neurologist is stumped, his behavioral psych is stumped, his PC doc is clueless, and I am waiting patiently for follow-up with Dr. Lewis.
BTW, thru all of this the Neurologist had his Q10 levels tested and they were low. Started on a chain store brand (not the most potent, but are quite expensive) and we have seen a 3 fold improvement in all symptoms. Of the 29 blood, gene, urine, and stool tests given by Dr. Lewis, Q10 was not one of them. I wall ask on next visit why not- maybe another factor-key in the PANDAS/PANS protocol....or may just be an increase in his immune system.
To everyone who replied: Thank you so very much! Obviously, I haven't figured out to respond to individual posts. I WILL figure it out! In the mean time, I will look into all the great information and links suggested. I will also update with any new findings (positive or negative). Just know, without this website and your support my DS14 would be on multi anti-psychotic meds or institutionalized or worse- would have killed himself. Yes, it was that bad. Without the resources here, I would have never found out about PANDAS/PANS or Dr. Lewis (who was on the collective list). From August, when he couldn't make eye contact and needed a mouth guard to today, where he wants to paint his room and plan a vacation to Florida. There is hope and I thank this forum for that!