Last week, we made our bi-annual trip to Cincinnati for Bradley's DMD appointments. Overall we got a good report. They are amazed that he is maintaining strength and that he is still getting around so well. It did take him a little longer to get up from a sitting position on the floor; this does concern me some but he did his 30 feet slightly faster this time so that was a plus.
Getting up from sitting on the floor:
June 2008-4.8 seconds
January 2009-4.79 seconds
June 2009-4.0 seconds.
Dec., 2009-4.94 seconds
Fast walking for 30 feet:
June, 2008-5.3 seconds
January 2009-5 seconds
June 2009-4.85 seconds
Dec., 2009-4.78 seconds
His weight continues to be of concern because extra weight increases the muscle workload. He is still on the 90th percentile whereas in the beginning (June 2008), he was above the 95% so that is good. It would be better to see his weight in the 75th percentile.
One of the biggest problems is that he is not growing in height. He is still 148.5cm which is what he has been since we switched to deflazacort in June, 2008. The endocrinologist didn't think it was necessarily the deflazacort, rather it was switching from a high weekend steroid dose to a low daily steroid dose. She also pointed out that his records show deflazacort has improved his strength and his weight so she would not recommend switching back to prednisone.
We discussed starting human growth hormone (HGH) with the endocrinologist and decided we would do testing for HGH deficiency in June, 2010. We will also do glucose tolerance/ insulin resistance testing. Depending on the results of these tests, we will decide whether or not to start him on HGH and/or Metformin. The HGH will help him with growth in height and the Metformin will help him lose weight and it will curve his appetite.
Right now Bradley is not concerned about his height. At one time he was one of the tallest in his class and now he says he is the 3rd shortest in his class. As Bradley gets older, there is a strong possibility he may not grow in height w/o intervention and if he does it may be very little. So we all discussed that in the future this could be an issue for him.
More than anything, I am concerned about his height because of how this affects him body mass index (BMI). Having a high BMI is not healthy, it's hard on his muscles and it is hard on his heart. Having DMD is alone is a problem for his heart and his muscles and we need to do everything we can to preserve his heart and muscles.
Metformin would also be good for weight and appetite control. Not only does steroids increase weight/appetite and height, but it even affects glucose levels. Steroids have been beneficial for Bradley over the last 7 years. Without them, I am not sure he would still be walking. But long term steroid use does come with some adverse effects.
We also discovered Bradley's hand splints are not right for him. They should have been custom made, instead they measured him and ordered them. I admit I was a little confused when we got them and they kept his fingers slightly bent instead of extended. I assumed Hanger orthotics staff knew what they were doing and they were following the physician's order that I failed to keep a copy of. Unfortunately, the insurane may refuse to pay for another pair until it has been a year. We were told to go to a Occupational therapist this time to have them custom made (although last time, they did say Hanger Prosthetics could take care of it).
They also said they would really like to see Bradley going to a Physical Therapist every 3-4 months for evaluation of range of motion & recommendations even if they have to send an order every time we go. We did go to a PT in Vienna in Jan. or Feb. but it's a 45 min. drive. I decided to call Rehab Unlimited in Anna (only 10 minutes away). They asked about whether he needed Occupational therapy as well and I told them about our dilemma related to the hand splints. I'm even thinking if I have to pay for them myself, he needs the correct hand splints.
We do have some appointments coming up on Jan. 18th. We will have him casted for leg braces (AFO's) that morning. In the afternoon, we have a Physical Therapy Appt. and an OT appointment at Rehab Unlimited in Anna, which is out of Memorial Hospital of Carbondale. The DMD team at Cincinnati Children's would like to have him seeing a PT every 4 months in addition to their Physical Therapists at Cincinnati Children's.
The OT will be making custom hand splints for Bradley. The hand splint he got from Hanger was just ordered after taking his measurements. They were set in such a way that it only encouraged the contractures in his fingers. They asked that we not even use them. So now, we may be paying out of pocket for the new hand splints w/o having it go to our deductible. Frustrating...but if he needs it, he needs it and we have to meet his needs.