Ok, so Joshua has been on a prophylactic dose of Augmentin for a year and on Sunday, we took him off. We were told that Augmentin has a protective effect and this is why it seems to alleviate symptoms so well. Augmentin is a common antibiotic for PANDAS. Unfortunately, in the past, when we took him off symptoms would return. We tried at Christmas and he made it a couple of weeks but became moody and I didn’t want to screw up his school year so we put him back on the low dose. Besides, we were in the middle of strep season…what was I thinking.
We are 5 days out…so far so good..a little moody but he is managing. For those of you as wrapped up in PANDAS as we are, Augmentin is a glutamate modulator. I think there is a huugge key in here. Glutamate is an excitatory neurotransmitter in the brain. There is a small study that shows excess glutamate in the cerebrospinal fluid of PANDAS children. Seems that when these whacked out antibodies head to the brain…they create excess glutamate….not good. Remember, excitatory,ie excess movements such as tics, ADHD, obsessive behavior. Im wondering if removing the Augmentin removes the glutamate modulator that keeps the excess glutamate at bay. This, in turn, decreases symptoms. Interesting that Namenda, which is an Alzheimers med that removes excess glutamate, is successfully being used to treat a subset of children with ADHD (would be interested to see immune panels on that subset!) I am all for trying a very low dose as the side effect profile is minimal. So far, I cant find a Dr. that will try it. Ok, well I guess there are only a few around here that believe in PANDAS anyway.
In June, we are headed to an immunologist, who is also identified as a neuroimmunologist (wish I had one of those a long time ago). He will test Joshua for underlying allergies and vitamin deficiencies. Should be interesting. I am also reading about the MTHFR (not an obscenity) gene mutation that about 30% of the population has that really can complicate matters for PANDAS kids if not addressed though the treatment doesnt seem to be any more than a special form of folic acid.
I will keep you all posted. I feel as if I should be able to put all of this towards some form of degree…but I guess I will chalk it up to motherhood…good enough!