June, 2007 St. Louis Children's Hospital Update

Just wanted to update everyone on Bradley's St. Louis Children's MD visit today. He is doing well for being 10 years old. We talked about the chest pain he has been having. I told him the Family PA had ordered an echocardiogram and it was normal. I also told him it was concluded that he has stomach problems (this could be from the prednisone) which is the reason for the Prevacid being added. They feel we should call the cardiologist and let him know. I told him he had complained some before November also and I had mentioned this to him at the Nov. cardiologist visit. At that time, he did an echocardiogram also which was normal then.
The Neurologist also wants us to consider starting Bradley on lisinopril, which is an ACE inhibitor and it is recommended in Duchenne MD for the prevention and treatment of cardiomyopathy. It has also been used to reduce blood pressure and for treatment of heart failure. He is going to write a letter to the cardiologist recommending Bradley be started on it. My mom is concerned about the side effects so I'm doing some reading so I can make the best decision.
We also saw the Physical therapist today about Bradley's braces because he is not wanting to wear them. In the summer they are so hot for him. We have been trying to get him to wear the day braces at night after hearing that suggestion from other parents and someone who works with DMD children. The PT thought this was a great idea and she really recommends night time braces over day time braces because the heel cord stays relaxed while Bradley sleeps but during the day, Bradley is on his feet more which is keeping the foot at the 90 degree angle.
She also said, we should not get on to him for toe walking. She says it's important to do the heel cord stretches often but he is toe walking to compensate the weekness in his quadraceps muscles. She says Bradley is learning how to balance himself and in the long run this toe walking is going to keep him walking longer. She said what he really needs to walk in a heel toe-heel toe-heel toe stepping manner. I knew this was a compensation but I have also been told that toe walking should be discouraged. Bradley says he cannot catch his falls when he has the braces on and I also notice walking with the braces appears to be a struggle for him.

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