Bradley’s Update (January, 2009)

We just returned from Bradley’s appointments at Cincinnati Children’s Hospital. It was a quick, exhausting trip but we are glad to have Bradley there. It is truly very different in comparison to the previous care Bradley has received. It’s not that he received bad care before; it’s just that he is getting the best care possible. I asked Tom what we should do in regards to alternating visits with St. Louis Children’s. He felt that if Cincinnati Children’s is willing to see Bradley every 6 months, then it’s worth it to drive a few more hours to Cincinnati every 6 months.

Switching from prednisone to deflazacort was a great decision. Bradley’s weight has dropped from the 95th percentile to the 90th percentile and he is showing improved strength. They always time him getting off of the floor from a crossed leg seated position and walking as fast as he can for 30 feet. His time on getting up from the floor remained about the same (improvement from 4.81 seconds to 4.79 seconds) but his fast paced walk improved from 5.3 seconds to 5.0 seconds. The neurologist stressed that although these differences seem very small, they are very significant for a child with DMD.

The serial casting Bradley did improve his ankle contractures but she mentioned it would be good to repeat the serial casting again because he still has a slight contracture in his right heel cord. We asked that if the serial casting should be done again, that we wait until the summer so Bradley does not have to go to school in casts. Bradley still walks on his toes but she said that was only a compensation to help him balance as he walks.

In June, they found that he had mild cardiomyopathy (mildly depressed left ventricular systolic function) on his cardiac MRI. He was started on an ACE inhibitor called lisinopril (5mg daily). His echocardiogram was okay but because of his age, the cardiologist wanted to start him on a beta blocker called carvedilol (3.125mg twice daily).

Using these two drugs in combination will protect his heart and slow the progression of cardiomyopathy. She mentioned they have observed that while boys with exon 2 duplications (like Bradley) are walking longer, their cardiomyopathy has progressed more. Starting Bradley on another heart medication has increased my realization of the serious nature of DMD but I try not to dwell on it. I’m just thankful to have a cardiologist specialized in DMD who knows how to treat the condition.

The pulmonologist is really happy with Bradley’s breathing. His pulmonary function studies showed him to be above that of even normal children. We told him that having him in Band must be paying off. He did order an Oxygen Saturation study overnight at home to make sure he is breathing well during sleep. We are just waiting for Apria (medical equipment supplier) to contact us about arranging for the study.

We need to follow up a couple of other orders the doctors wrote for Bradley. They recommended that we establish Bradley with a local physical therapist, someone who would check on him every 3-4 months on his range of motion and would give recommendations on equipment needs. They also would like for Bradley to be evaluated by an ophthalmologist for cataracts since steroids sometimes cause cataracts.

Overall, Bradley is still doing well and they are all amazed that he is still walking.

 

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Comment by Lisa Jones on December 14, 2009 at 11:32am
Regina,
Stairs are difficult for Bradley too. He usually holds on to both rails and pulls his right leg up. The funny thing is at Cincy last week he actually alternated his feet on the steps and one time didn't even hold on as he walked up the 4 steps. It's hard to remember when he first started having more difficulty with steps...maybe age 8. He very seldom alternates steps and this was one of the problems he had at diagnosis around 3 1/2 yrs.
Comment by Regina on December 14, 2009 at 10:49am
Lisa-- I am so heartened to hear how well your son is doing! My son will be 8 in a month, and the only time he really seems to have dmd is when I watch him go up the steps. Do you mind my asking how Bradley manages the steps? Jordan doesn't complain at all, but I think we'll move to a house where he doesn;t have to deal with it w/i the next 18 mths or so. How old was Bradley when you noticed a problem with steps, if he has any? By the way, Jordan only struggles on the steps at home-- he performs very well for his PT. I guess he doesn't want to put out the effort if he doesn't have to. Thanks for your help!
Comment by Char Burke on January 14, 2009 at 12:26am
So exciting to hear how well Bradley is doing. Pls tell him that he rocks! Warms my heart to know that you are getting the best care for him. We love Dr. Wong. Char Burke
Comment by Lisa Jones on January 11, 2009 at 7:05pm
We were in the Cardiology waiting room around 12-1pm on the 8th....and around 9:30am on the 7th. Of course I could be off on the time. How old is your son? Wish we had gotten to meet. Sometimes I see families and wonder if they look like someone from PPMD or if they have DMD but it's kind of awkward to ask, "Does your child have DMD? or Are you a member of the Parent Project community? At the last visit they gave us a blue pouch with a green card and we forgot it this time. I think by our boys wearing this, we are able to identify each other better. I will have to look at your page and see if I recognize any pictures.
Comment by Sara Savalli on January 11, 2009 at 2:27pm
I think that you saw us there, well me there, my son happened to not be near me when I saw you, in cardiology, well My name is Sara. I am happy that bradley is doing good.
Comment by Lisa Jones on January 10, 2009 at 11:03am
He will be 12 on March 27th.
Comment by Karen Barnett on January 10, 2009 at 1:38am
Lisa,
Sounds like a good report and that Bradley is doing very well! You must be very pleased. I can;t remember exactly how old Bradley is. 13 or 14? I hope my son (7) is doing as well at his age.
Karen.

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