CJD

Thanks for the reply. Our testing was through courtagen. It is listed as a homozygous mutation. The wording is "the pnkd protein may function to modulate striatal neurotransmitter release in response to stress and other precipitating factors." I am wondering if this has anything to do with the severe fight or flight response we see. We aren't seeing the movements that are characteristic of the disorder. Also, I noticed that the research says "lower glutathione levels were found in cortex lysates from PNKD knockout mice versus WT litter-mates." I know glutathione levels are something people have been discussing regarding holistic approaches.

For those who have had genetic testing on their children, has anyone found a gene mutation for PNKD? This gene causes a form of dyskinesia. If your child is positive for this mutation, are you doing anything to address this concern? Do you find that it relates to their behavior during a PANDAS / PANS flare? What are the behaviors your child displays during a PANDAS / PANS flare? Looking for similarities since I know PANDAS / PANS presents differently in different children. Thanks for any input!!!

We tried Intuniv and then we tried Kapvay with my DS (he was 7 at the time) before the PANDAS diagnosis and treatment. We did not see any improvements to the same symptoms you have listed above. Again, this was before antibiotics, antivirals and ibuprofen helped settle things. While trying both meds., there were very groggy periods. I would say we stuck with them for about 6-8 weeks before we stopped. I do wonder if they would make a difference now that we have seen some improvements with antibiotics and things aren't at the same level of intensity. Good luck!

Has anyone used Seroplus? It was suggested for my ds. I have not seen any reviews for it online and I am curious about others' experiences with this supplement. We were hoping it might help with irritability.