FRUSTRATED!

Frustrated doesn't even begin to describe what I am feeling right now. So much for the saying, "What you don't know won't hurt you". That is not true is Jayden's case. We left for SF at 5:45am on Wed, fought the traffic and arrived close to 10. We were set up in our room and waited for the docs to come in and talk to us about the ACTH that we were sent there for. Well that was a joke. An attending whom I have never met came in with her crew and told me how against the ACTH she was because of all of the horrible side effects. That was the only thing the two of us agreed upon. She went on to tell me that it didn't matter whether or not we stopped the infantile spasms or not. They were not the reason Jayden was regressing, the underlying cause (whatever is wrong with him) is the reason. It was a very tense room when she had the nerve to tell me that UCSF had exhausted all tests possible and have not found what is wrong with Jayden. He is the only child with the symptoms he has and has yet to be diagnosed with any real thing. Basically she said that they had given up on him and there was nothing left for them to do. Keep in mind that I have never talked to this woman EVER! It was all I could do not to throw her out of our room. I told them I was leaving if that was how they felt because I was going to get another opinion. It's not that there aren't any more things to test him for it's that she is not willing to test anymore. So I left that afternoon. After a very emotional day and after talking to the Neurologists that I deal with daily we concluded that she was full of %^&%/! Dr. Hutch and Dr. Armstrong/Wells will stand by Jayden and our decision to go somewhere else. That woman had no right to talk to me the way she did, especially without the backing of the whole Neurology team. I'll deal with her later. Right now we are focusing on getting paperwork ready so we can go on a roadtrip. After talking to lots of people and searching the Web I think that at this time our best shot is UCLA. Will insurance pay for it? I don't know. But what I do know is that we have had such wonderful support from all of you and prayers too! Where there is a will there is a way and we aren't going to let money get in our way. I am bound and determined to give this kid the best shot at life no matter what. Jose and I have been discussing different ideas to raise money. As soon as I have more info I will let you know what we plan on doing. Doctors don't know everything I would love more than anything to prove SF wrong! So please continue to pray for us. Right now Jayden is doing ok. I am going slowly back up on his Tranxene and I guess we will have to wait and see what happens. He is still having pretty bad spasms but he is still in a great mood. He gives me strength to keep fighting because he hasn't given up yet. We'll never give up on him! Love, Brandy & Jose