Do psychiatrists shy away from PANS patients?

[ktdommer]

My son, 18, is having the worst luck with psychs. Now that he is declining, I'm finding it harder to find a good psych willing to take him on as a new patient. His dingbat psych announced last week that she didn't know how to help him and maybe it was time we found a new doctor. Then highly recommended psych said he didn't feel that he would be able to help and that my son needed something more. He doesn't need a hospital or a home, just a good doc willing to work with him to find the right combination. I haven't even asked a psych to treat bart or PANS.

[MomWithOCDSon]

We went through something similar a few years ago, and like you, we were receiving medical treatment from other quarters, but the psych we had was flummoxed by DS's behavioral set and couldn't seem to wrap his brain around the variety of comorbid behaviors (separation anxiety, OCD, brain fog, ADHD-like attention issues, etc.) that DS was putting on his plate. When he would switch meds, and/or increase dosage, and DS's response was "uncharacteristic" based on the literature or his experience, he looked like a man who'd lost his best friend. Similar to yours, he finally told me, "I think you've moved beyond me here. I'm not sure what else I can do."

 

Because my son's primary behavior set is OCD, I went to the IOCDF web site to find a psych that, by their listing, knew OCD. Then I called and interviewed each one who was "geographically desirable," asking them about their familiarity with PANDAS, comorbid behavior sets, etc. Eventually, we were able to find a good one, and now we've been with her for nearly 4 years. She's been with DS from fairly deep into his Giant Exacerbation, through the last couple of years during which his needs have been mild to minimal, and she continues to listen to us and adapt accordingly.

 

Since my son was dxed with "regular OCD" at the age of 6, I've found it difficult to find good psychiatric help, even though I live in a major metropolitan area. The ones who participate in my health insurance coverage group? Forget it; you're lucky if you can get an appointment with any of them within 6 months of your first call. And the others who come "highly recommended"? Most of them have existing full clients lists and refer you to "a colleague" who in turn refers you to another colleague, and on and on. If I had time to do a career over again, I'd consider psychiatry because it seems there's definitely more demand than there is supply!

 

Hang in there! And let your fingers do the walking. Find someone who's qualified and, if not incredibly knowledgeable about PANDAS/PANS, who's at least willing to listen, consider, read information you're able to provide, etc. I would also do what I could to be a very well-informed consumer so that you can talk intelligently with anyone you chose about treatment protocols and hopefully prevent the sort of "experimentation" we allowed our DS to go through at the hands of our first psych. Hindsight is always 20/20.

 

Good luck!