In addition to all of Michael's "normal" symptoms which have in fact become the norm for us, last November/December he started to complain of heart pain. We ended up in the emergency room a few times because he complained that his heart heart and he had a rapid irratic pulse along with dizziness, weakness (he couldn't hold his head up, walk or lift his arms at times), ringing in his ears, confusion, cold limbs and he was ashen and had a bluish tint to his lips. However whenever we checked his oxygen it was fine...like 92-96. He looked like he was dying, but by the time they got around to seeing him (because his oxygen measured fine they weren't in a rush) he had started to recover. This gave us great cause for concern and we pushed to see a cardiologist.
They did all of the routine work-up and said that his heart looked great, but he still continued to have symptoms when he would exert himself vigorously so we pushed some more and got an exercise study or treadmill test. The results were: They didn't let any of us be in the test with Michael, they didn't have him wear his monitors like he does when he is playing and they didn't run him, just a brisk walk. And guess what....everything was in "normal range". I was so upset I actually cried in the exam room afterward to the cardiologist. I don't know what prompted it, but he looked more closely at the excercise test and called me 10 days later to tell me that he had noticed Michael's O2 dropped when he was exercising. Not by much just down to 88, but I knew what he needed so he started using oxygen and improved by leaps and bounds.
He still had the strange symtoms when he wouldn't remember to turn his oxygen on and do things like mow the lawn, so I did some more research and it still sounded like dysautonomia to me. We wanted to get to the bottom of this so we asked our peditrician to help us get in to the specialist that deal with this. After some time he said that he had tried to talk to the specialists in Chicago and was on the phone for a while with no real results, so he would talk to a hospitalist at Primary's and see what they thought. We had been working on this for quite some time so we didn't think it would be all that quick of a result.
One morning I got a call that the hospital was expecting us as soon as we could get there. I asked if we could wait a few days because the kids were in theatre camp and the performance was that Saturday, but was told that NO, it had to be today. Wow, talk about a lot of waiting and then hurry up. I sent the other kids to theatre class with my sister and packed up for Michael and myself. Dennis was in meetings at work and couldn't get away.
