tj21

Only Cam KII was high on ds14's Cunningham Panel, everything else in "normal" range. Still waiting for the D2 to come it as well. @rachel, your Wieslab article had a nice (eg. layperson's) description of what only an elevated Cam KII "means." Meanwhile, we continue to treat for PANS (since March 2014) and gut healing, and have seen a huge decrease in tics. Still getting aggressive/euphoric flares, about every 3-4 weeks. Just got YouScript Cytochrome and Pharmasan Neurotransmitter results and working w/Integrative PANS NP to balance Serotonin and Glutamate out. ds14 is on NAC and has elevated Glutamate, what is the contraindication, @rachel? Completely exhausted here too, though now I could be an honorary LCSW!

@LLM , got it. Our PANS NP was also recommending 23andMe, will add that to my list for Monday's call. Thanks again.

Waiting for Mold test results to come back, among other allergens. I wish there was a giant PANDAS (haha) database for all this tracking, we have so much data to try to organize and think about. Exhausted! Do you all think a reaction/flare would look this severe (raging/euphoria and alternating) to where we need another 5150? ds14 was also around friends' dog and we know he's allergic. But 3 yrs. ago when near their dog, had no raging or trigger even though I'm sure he has had a PANS dx since well before that. Included will be MTHFR and 5HTT (we did previously) and SLC6A4. I did read some of the methylation threads; there's just soooo much to catch up on! Wow. And new on the 23andMe site, though our PANS MD could probably interpret for us: We no longer offer our health-related genetic reports to new customers to comply with the U.S. Food and Drug Administration’s directive to discontinue new consumer access during our regulatory review process. Just did urine Neurotransmitter test (d1, d2, serotonin, epinephrine, and more) thru Pharmasan, waiting on results. Thanks!

Oops, I didn't realize my subject heading was so long and got cut off. Anyway, thanks all, am making a list of questions/issues for our next consult w/PANS NP and actually for 3 years Cannibidiol oil has been on that list! I saw some discussion either here or on the TS forum, or both. Yes, treating for specific yeast overgrowth (tested), and I have been tracking ds14 behavior/tics/episodes and meds for years - OCD-mom , which finally was helpful with the PANS NP and will be once we have the Cytochrome P450 back. I am pretty sure last flare/acute episode was in part from seasonal allergies (high IgE). Waiting for more extensive food/protein cross-reactivity tests to come back. Will have to check Magnesium, but NP put him on Mag.Citrate 800mg (constipation). Also, ds14 has other complex underlying dev.disabilities, which makes this even more of a puzzle. And I appreciate learning something new each time I reach out.

Same with our test and I also assumed it was b/c the D2 is missing. Our PANS MD/NP interpreted it for us and based on only the camKinase II elevated, we are going with PANS. Had slew of other testing done to support autoimmune encephalitis/PANS as well.

Hi - new here! After at least four years of an unbearable situation, including a psych. hospitalization and 2 years away, our ds14 finally moved back home in March, when we started PANS treatment. Better late than never. We are continuing to stabilize him and on the whole things are improving under the care of our PANS MD/NP in N.CA. We are treating integratively and weaning ds14 off of many of some of his psychopharms. However, we have had four acute flares that look like manic episodes alternating between euphoria and aggression. To the point where our Crisis Team has had to come and we were deciding whether to call 911 and request a 5150. UGH. We continue to work on what is causing the flares but in the meantime, the episodes are so acute that we need to safely sedate him at home (I know, terrible), which is essentially what the psych hospital will do, and worse. 1) Any experience with meds to quell an episode in the moment? Benadryl or Atarax used to work, so I'm assuming he has high histamine. Ativan or any benzos cause a paradoxical reaction. 2) Anyone done Cytochrome P450 testing through YourScrip in Seattle, WA? Thanks so much.