Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS/PANS)

Hi - I realize this post is several months old but it showed up in my digest and, having been through what we went through, I want to spread the word to hopefully spare other families some of what we went through. 

Our child acted similarly (rage fits where it seemed like they weren't "there"/"themselves" - lights on but nobody home, and weirdly scripted-sounding comments), not to mention OCD-type behaviors, extreme insomnia, us walking on eggshells ...) and it turned out to be PANS/PANDAS. 

I urge you to at least consider whether to look into PANS/PANDAS. Traditional mental health providers are not often aware of it and do not understand that it takes a different approach to resolve (ibuprofen (anti-inflammatory), antibiotics, steroids, sometimes IVIG) & the usual modalities (talk therapy, SSRIs ...) may not work and might make things worse. 

We lost ~10 yrs due to various misdiagnoses (PDA was one, though the PDA parenting techniques/recommendations were more helpful than most of the advice we got on our journey) and unproductive approaches. The emergency rooms, crisis teams, etc. are not going to be familiar with it so unfortunately that's probably not a great solution.

Here are some resources that might help you figure out whether this might be part of what you're dealing with. Note that while the diagnostic criteria tend to focus on sudden/acute onset, this was not our experience - it came on more subtly. (Two quick and easy things to look at might be: (a) does your child ever have notably dilated pupils? (b) if they take ibuprofen (for a headache or whatever), does that seem to take the edge off for a little while?) Sending support and hope your way ...

https://aspire.care/symptoms-diagnosis/symptoms/

https://pandasnetwork.org/understanding-pandas/signs-and-symptoms/

https://kids.iocdf.org/what-is-ocd-kids/pandas/ 

My son had a similar situation. Research PANDAS/PANS. This is when an infection (virus, strep, Lyme, mold, or other issue) cause major behavioral regression. You may need to find a doctor knowledgeable about PANS/PANDAS to help you. My son is doing much better since getting a diagnosis! 

I can feel your pain. I would definitely recommend finding an eating disorder specialist immediately and also visit her physician if you haven't already. I was in a very similar situation with my daughter about a year ago (she was a few years younger than your daughter though). A previously picky eater, she rather suddenly became depressed and very avoidant of eating, with very OCD-like rules about food. We tried regular talk therapy for awhile and it was useless. The therapist claimed I was "giving her too much leeway" with food and that she must be acting out about some deep seated trauma (typical mother-blaming stuff!). Eventually she lost so much weight we ended up in the eating disorder unit at Stanford for a week. In her case, it turned out she was suffering from something called PANDAS and was treated with a combination of anti-depressants, anti-inflammatories, antibiotics and therapy.

 Now, that might not be the case with your daughter but no matter the underlying cause, I can highly recommend Elizabeth Burns Kramer in Rockridge, who specializes in eating disorders. http://www.elizabethburnskramer.com/ Elizabeth worked with us after my daughter came out of hospital and it made all the difference. She is super warm and kind and she helped us come up with some really creative strategies - not just talking! She is young too, and I think she would be relatable for teens. I can also recommend the book about childhood eating disorders called "Giving Food a Chance" by Julie O' Toole. It contains a ton of useful information and it reassured me that yes, my child was suffering from a eating disorder, and no, it wasn't my fault or hers! Best of luck to you and please feel free to reach out to me directly.