Oh, Mommieandme, I’m so, so sorry you are going through this. Unbelievably, this is not uncommon. One friend/patient told me (after she lost 80 pounds because she was unable to eat), that her doctor told her it may have been the best thing that ever happened to her. WHAT?! She responded with something like, “Dr., this isn’t about me looking cute in my jeans. I
AM VERY SICK.” 🙁 I’m embarrassed for your doctor, really. First, can you tell me what meds your daughter is taking? Are you following any of The Driscoll Theory protocol? When I was too sick to keep ANYTHING down, clear liquid Benadryl calmed my system enough for me to eat. Did you try Zantac/Zyrtec? Can you ask your doctor to check ALL of her B-vitamin levels and correct as needed (with INJECTIONS)? Have you tried (forgive me if you’ve already told me) Diamox if she has symptoms of hydrocephalus or an empty or partially empty sella on her MRI (I wouldn’t take their word on the scan being “normal” or not. But DO ask about the sella, OK?) Let me know? Oh, and you can google “low histamine foods” — it sounds a little bit like she is reacting poorly to histamine (hence the mast cell medications). OH! Has she tried Cromolyn Sodium?! It takes a few weeks, but BOY, did it calm things down for me!!! When we ran out and it took forever to get a refill, I realized how much it was doing for me. Unbelievable. Does your daughter have constipation/IBS? If so, depending upon her age, perhaps she could get in the upcoming IBS treatment trial? (more on that soon) That would get her started down the right road, I think. ALL DISCLAIMERS IN PLACE, OK? I cannot diagnose or treat you, certainly not over the internet. I am sharing what I have learned, as a patient, on my journey, and that of my kids. Cool? Big hug, Diana