Bradley is doing very well with muscle strength for an almost 14 year-old with Duchenne Muscular Dystrophy. The doctors are still very pleased with his ability to walk. They were also happy to see that he had lost a significant amount of weight which has contributed to his being able to maintain muscle strength.
He was diagnosed 6 months ago with steroid induced diabetes. Because of this, Bradley was started on a medication for diabetes which also helps with weight loss. He has also worked very hard on his diet and he has given up sugar.
They did find some mild compression fractures in his spine at T-11 and L-5. And from the bone scan, he is on the verge of osteoporosis. The neurologist prescribed Fosamax to be given once weekly. Fosamax will prevent further bone loss.
Bradley is still not growing in height. He is in the 5th percentile for his age and height. In July we had testing which showed his human growth hormone to be sufficient but we were also told he may not grow much because of the steroids. Insurance companies usually don’t pay for Human Growth Hormone unless HGH is deficient or height drops well below 5th percentile. It is very expensive and it can also increase glucose levels. Since Bradley does not have a problem with his height at this time, we didn’t see the need to pursue that at this time.
We were hoping he would be eligible for this new 6 month study involving Insulin-like Growth Factor. This would have potentially improved his height and strength but he didn’t meet the bone age criteria of 11 years. His bone age test result showed his was at 12 years in July.
They are also concerned about Bradley’s heel cord contractures, mainly because his heel cord contractures are not the same on both sides. (The right is -30 while the left is -10). Bradley has always had trouble with his right heel cord being tighter than his left. In addition, he had a bad sprain in the right ankle a year ago and it is still tender at times. Because of the pain, we have not been as aggressive with his right heel cord stretch. But we are going to have to more aggressive.
They really want to serial casting again but we have been resistant to this because it involves several trips to Mt. Vernon 1.5 hours away. We had it done over an 11 day period in the summer of 2008 and it didn’t seem to improve his contractures that much. It was stressful taking time off from work and making the trip. We had to get 3 cast changes over that 11 days.
Now the serial casting is done over 4 weeks with cast changes weekly. That may be a little easier for us. What they suggested is that we take Bradley to a local Physical therapist every 2 months to evaluate the heel cords. At home, we will get more aggressive with stretches on the right heel cord. If there is no improvement, then we will go ahead and do the serial casting. They don’t want us to put off the serial casting more than a few month , if things don’t improve.
Another reason for the resistance is that he will have to use his wheel chair for a month at school which could decrease strength and require a lot of help from his classmates. They do believe Bradley is strong enough to get through the serial casting and they said not to worry about school, the school will have to accommodate him….and I know they will. When he sprained his ankle last year, they were very helpful and the other students were glad to help push Bradley in the wheel chair.
His echocardiogram was fine and they didn’t have to increase his heart meds this time. He has mild cardiomyopathy which was found in June 2008. In July, 2010 there were some minor changes on the Cardiac MRI that warranted an increase in one of the heart meds. But things are fine right now.