In my experience, doctors don't always charge for copies of your files... especially if you're getting them to show to other doctors.  It never hurts to ask.  Even they won't copy them for free for you, they should fax them for free to the next doctor.  That's a professional courtesy.

Heather  

still seeking - Possibly the records from Cincinnati Childrens would be adequate for Dr. Castells, since they seem to have done a good work-up. I'd give it a try, anyway, and ask them if they would refer Rylee to Dr. Castells.

Is she taking pills or liquid medications? Some of the liquids contain alcohol, which can cause mast cell activation and increase symptoms in children. Pills have fewer ingredients and can be mashed and added to those mashed potatoes and zuccini.

It's not surprising you are overwhelmed right now. Anything new, especially concerning your daughter's health, is really difficult to deal with.

The daily Benadryl might be a problem. Is it helpful with her nausea? When Benadryl is taken routinely, it can disable one of the two enzymes we have for disabling histamine, and histamine level may rise and cause symptoms. Perhaps you could look into one of the motion sickness tablets for her nausea, like Bonine or Antivert. They are also antihistamines and may be useful in two ways, then.

The hives that were seen on her endoscopy suggest that she probably needs more antihistamine. Zyrtec is used in relatively high doses by even young children with mastocytosis and is safe long-term. At her age she cetainly could tolerate 20 mg a day.

Is it possible for her to take any of the multi vitamin/mineral preparations? On her limited diet, she could well be short on things she needs.

Keep cool, Mom, and get through one day at a time. The meds you are giving Rylee are the right ones to give a person with mast cell activation syndrome, and specific testing for that or some other disorder can wait a little while you and she get her symptoms under control. You are a great advocate for her.

NZNancy.....thank you for suggesting that I try having Cincinnati Children's send Rylee's medical records to Dr. Castells.  I will try that!  Had no idea about the Benadryl....I will check into Antivert and see if it is safe for children. The Benadryl definitely does help when she is severly nauseated.   She doesn't take any liquid medications other than Gastrocrom.  She takes Zyrtec, Zantac, Entocort (and the Benadryl I have been giving her) and they are all pills.  
Thanks again....love this forum!