Thanks so much for everything.
She has seen a rheumatologist who ruled out lupus.
We are close to White Plains (about 20 min away). She is on the waiting list (3-4 week wait) of Cognitive Behavioral Specialists of Westchester.
We did contact the NIMH (earlier, before she stopped refusing to eat/drink) and they said she wasn't a candidate for their study because she has had some OCD symptoms in the past. She had some for a few months when she was 8 (nowhere NEAR as severe as now) and even more moderate ones when she was 5. In the past we didn't realize that her symptoms may have been OCD, it's only been when we got hit over the head with the symptoms this time that her past behavior became suspicious of OCD. 5 year olds can do lots of unusual things! Only in hindsight does it look like her symptoms may have been OCD instead of just wanting things done in particular ways. She's also always been very strong-willed, so it can be hard to tease out where she has been just opinionated or where it may have been OCD.
They did add Zoloft (25mg) yesterday. They started with the Abilify to tone down her rage & fear which they increased to 5mg yesterday.
She is on 24 hour surveillance and being monitored very closely for any signs of side effects of the drugs. I cannot tell you how much I hate putting those drugs into her, but I also couldn't let her not eat/drink/sleep (she could sleep when she collapsed, but it was only for a few hours each night).
I have been trying to contact a PANDAS/PANS doctor and even have an appointment for her with Dr. Bouboulis in October (I made this appointment a few weeks ago - it was the best I could do), but we couldn't wait anymore once she stopped eating and drinking.
I'll have to look up by what you mean by change of diet. We have put her on a dairy-free (actually casein-free), gluten-free diet. She also needs to avoid eggs & strawberries. We also keep her off of artificial colors/flavors & preservatives as well as anything you don't know exactly what it is such as 'natural flavors'. She's been on this diet for 2 years, but, suspiciously, started going off it a bit around January of this year.