Better late than never

We had our appointment with Dr. Chira and Zack's levels are still to low. We have increased his medicine again, and his skin still is to pink for our liking. Zack has been classified as a chronic case of Dermatomyositis. Typically children are on medication for 2 years and tapered off after that. Zack was diagnosed 28 months ago and he is still struggling with all this. It looks as if we have a few more years of all this. Saying that we have decided to see Dr. Pachman. Dr. Pachman is THE world renowned Dr for the disease. It took some time but we have an appointment to see her. She is THE Dr for this disease. We wanted to talk to his Dr's before I posted it on here. His regular Dr is out on maternity leave and wanted to get in touch with her and get her feelings on this before we made any definite decisions. She is behind us on this decision and so we have moved forward. I have requested medical files and faxed over labs, we got a social worker and he put us on the waiting list for the Ronald McDonald house by the hospital. Bad thing is we don't find out till we get there if we got a room or not. We are really looking forward to this trip and to see what her take on him is. He will be undergoing a lot of different things while in Chicago. The nurse said they will give us more info after reading his file.

When you look at Zack he looks great and has a ton of energy, he crashes pretty hard though, he goes goes and goes and boom he's asleep. His skin will not clear up at all. The only thing that helped with that was the IVIG treatments and it was only helping his skin not muscle. Lets hope that going to Chicago will give us answers we so desperately need. We have our appointment on Aug 17th, he has a bone density scan at 9 then we see the Dr at 10 and will be there till 4 or 5pm. It's going to be a long day! More info to come when I find more out. This is good news