The first doctor who came in the room for pulmonary thought we should do a sleep study next time, but Dr. Meade said he didn't think that was necessary at this point with his pulmonary function studies being so good. So he suggested the Oxygen saturation study to be done at home during sleep. Bradley will get an MRI of the heart every year.
I have family in grand rapids, yes we are doing the ptc trial it's like a year long, jonathan is 6. do you go to the doctors in grand rapids? i beleive madeline would be her name because i think that is where she went, we saw her a couple times in cincinatti before she left.
Hi there, Sara. We are only about an hour away, in Grand Rapids. Are you doing a trial of PTC124. How long does Jonathan stay on it. How old is he. My Kyle wil be 4 on July 28 adn Kevin is 8--both have DMD.
we finally got ours on, on friday also, it was redicilus, we had to go stay with other people for the week, it was not fun, expecially with trying to remember everything to take over there with us each night. jonathan started ptc124 about 2 weeks ago, it's going well.