WE ARE GETTING CLOSE TO AN ANSWER!!!
His main Dr. through this, a hypertension specialist, called today with the results of his last round of bloodwork he had done to rule out a few rare diseases. Everything looked good except for two results. They were both low. He didn't say exactly what was low but he did say that it is a strong indicator for an extremely rare genetic disease. There are less than 80 confirmed cases of this disease worldwide since 2008. He is having us do one more blood test that will confirm his diagnosis. The bad news is that most insurance companies won't cover the cost of the test. He said we will have to fight them on it and he would send as many letters or forms as it took to try to get them to cover it. He said it is very expensive. From what I have been reading online, he will have to be on medication the rest of his life to control it. We are very excited about the possibility of finding out whats going on with him.
Thanks again to everyone who has supported us through all of this. We really appreciate it.
More good news. His rash is starting to go away and yesterday he came home from school and said he had a really good day. He took part in Gym class for the first time since this all started. You would have never believed how excited he was about playing wiffle ball.
