Well we saw the geneticists yesterday and it looks like we finally have a dx.

Dd has been diagnosed with Mast Cell Activation Disorder.

He is placing her on a strong antihistamine and a Mast Cell Stabilizer. She is also now required to eat a very clean low histamine diet. There are additional testing that he wants to do in order to solidify the dx and treatment. However, right now we are fighting with insurance to cover anything!! I am so glad to finally know what has been wrong with her all this time. He is not sure if the initial neck injury is specifically related or not and said we may never know that for sure. It will be hard for her to eliminate so many things from her lifestyle but she is determined so I have high hopes!!!