Clear as mud

That was a long visit. With drive time, waiting time, the appointment, blood draw, and checkout we were gone from 1:30 until 5:30 almost. By the time we got home we were both exhausted!
Lu fought the blood draw with all her little might. It took me and three nurses to hold her down and she SCREAMED so loud that the office manager came back to check on us because she assumed her employees must have been doing something wrong. Of course, she only discovered that my daughter just wasn't going down without a fight and the nurses were doing the best they could. I felt so bad for Lu. She was trembling and crying. We do these tests yearly or sometimes more and all I could think was, I CANNOT do this again.
We sat with Dr S for a while and discussed a LOT. I left not feeling 100% clear on anything, but I expected that.
We don't have much more in the option department to help Lucy's fragile and sensitive skin. She really is far above the recommended dosages for the medicine shes on, and we are limited on other medicines because of her belly issues. The current dosage does a good job controlling the dermatographism, but she continues to deal with all around weak skin. We struggle to find shoes that don't blister the skin on her feet and have to select outfits that are loose to prevent elastic waistbands from rubbing sores onto her skin. The heat often will cause her to itch from head to toe and the cold brings about bouts of Raynaud's that leave her in excruciating pain. Her skin has become an issue that affects a number of things we do with Lucy on a daily basis- the clothes she wears, how often she plays outside, etc. We decided that we are going to move her meds up slightly higher and see where we get, we are hoping and praying for an improvement.
We also discussed another food challenge. We try to do one every 6 months, this way she has time to heal and get back to baseline before we try again. We are shooting to start in September, once all the vacations and summer fun are finished. Dr S would like to see us try something else but leaves the final decision up to us. Its so hard to decide. I mean, really, is it worth it with such a slim chance? I don't know.
Dr S. decided that we would repeat Lucy's RAST testing (allergy testing on the blood) and see if that could give us any clues about Lucy's Do Not Try List. The RAST testing wont specifically rule in a food, just because the test says Lucy is not allergic to it doesn't mean Lucy wont still react to it. However, it will tell us when a food is out totally. If the test says she allergic to a food, then we know for certain it is out and we wont waste time on it. RAST testing looks for specific antibodies involved in an allergic reaction to food, but most of Lucy's reactions are what are called CELL MEDIATED reactions- stemming from eosinophils, T-cells, or Mast cells. There are no tests that will reveal foods that Lucy would have a cell mediated response to, the only way to rule them in and out is with a food trial.
So for the moment, we are waiting for her test results to come back before deciding what to do from here. Dr S mentioned a trial of chicken possibly next, but it all depends on her tests. He said they should be back within a week so hopefully they will give us some clues.