Jacob is 11, almost 12 and, of course, has DMD. He has only recently started Lisinopril. I am very discouraged with his cardiologist. I pushed to have him seen by a cardiologist years ago and it was confirmed that his heart was affected by DMD. That said, the cardiologist refused to put him on heart meds as, according to him, there is no evidence it is preventative and he waited until his heart got weaker. I know he should have been on them earlier because the cardiologist in Philly (when we were in the PTC trial) advised that if he was being treated there, he would be on both types of heart meds.
Now his heart is only functioning at 57%, up from 50% when he started the meds in the fall. I was so ticked off when he told me it was up to 57% I can't verbalize it. He hadn't told me it was at 50% at any point. He talks about the side effects of the heart meds but hasn't actually described them. I know I need to call him (or write him) but first I am wondering what experience others have had. If I am not satisfied I am going to ask for a second opinion, the only issue is that he is the head of pediactric cardiology at our pediactric hospital - and there is only one pediactric hospital in the Maritimes.
I have already printed off and given him the recommended standard of care for DMD boys. I don't think he has even read it. When I talked to him about Idebenone, he practically dismissed me. I can't believe how conservative he is, especially when he is such a young doctor.
Any comments or informaiton anyone can give on their son's heart medication would be wonderful.
I am feeling quite frustrated at this situation. I can't believe I let him wait so long before he put him on some medication. I should have insisted ages ago and now I just want to make sure is getting everything he should be getting.
The echocardio. I can't recall that he has ever had a heart MRI. Why?