We just returned Thursday night from our bi-annual trip to Cincinnati Children's Hospital for Bradley's medical appointments. Bradley's neurologist and physical therapist are pleased with Bradley's muscle strength. They are really amazed by it. They emphasized again the importance of Bradley's stretching exercises and wearing his AFO's every night.

The physical therapist would also like for Bradley to begin wearing his hand splints again because his fingers are getting tight again. Bradley had stopped wearing these because it was really hard to sleep with all of that on. They suggested getting him to wear these during the day when he is just watching television. They suggested also wearing the AFO's some during the day as well.

His bone density has improved after being on fosomax for the last 6 months. He was diagnosed with osteoporosis in January. Dr. Rybalsky hopes this will continue to improve over the next 12-18 months.

His heart MRI showed increased fibrosis (scarring) but the heart function is excellent which means it is squeezing very well. This is with the help of lisinopril and carvedilol.  The fibrosis is a normal occurrence in DMD and she is not concerned. She did not see the need for any increases in heart medication. She also will not need to see him until next summer. She plans to continue Cardiac MRI's annually. MRI's pick up on changes much sooner than an echocardiogram would. In fact these fibrotic changes are not detected by echocardiograms.

His Pulmonary function test results were very good. However, the  pulmonologist said these numbers only represent what is going 30 minutes of the day. He does not know what is happening the other 23 1/2 hours of the day. 

He is noticing a gradual development of contractures in the rib muscles of boys with DMD on chest x-rays. He showed us a comparison of Bradley's chest x-rays in June of 2008 and July 2011. He pointed out how Bradley's ribs were more horizontal in 2008 and how they are beginning to become more vertical now. This is because of muscle contractures around the ribs and over time it will decrease lung capacity. He does not want to wait until we are in trouble 2 years down the line. He wants to intervene now.

He has instructed Bradley to begin deep breathing exercises 15-20 minutes per day. He wants him to breath in as much air as possible, hold it for 3 seconds and then slowly breath the air out, repeating several times. This can be divided into intervals throughout the day but he needs to do this a total of 15-20 minutes daily. He did not have the sleep study results yet but will call if there are any urgent concerns. Otherwise, he will discuss the results when he sees him in 6 months.

Bradley is still not growing. He has been 4'10" for the last 3 years and is now well below the 5th percentile in height. Because he is not bothered by this right now, we plan to wait it out and see what happens. There would be some side effects to consider with growth hormone therapy and we feel it is not something we want to pursue at this time. 

Bradley had lost a lot of weight at this last visit and over the past 6 months he has maintained his weight. He was above the 95th percentile a year ago and now he is just a little below the 75th percentile. They are very pleased with Bradley for his efforts. The metformin for steroid induced diabetes/insulin resistance has helped with his weight and appetite. Bradley has also done a great job keeping his intake of sweets down and making healthier diet choices.

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Comment by Lisa Jones on August 11, 2011 at 8:20pm

In the progress note, I saw that the pulmonologist has diagnosed Bradley with Early Restrictive Process.

 

Comment by Lisa Jones on August 11, 2011 at 8:15pm

Semra, I will send you an email.

Comment by semra inanç on August 11, 2011 at 8:49am

Hı Lisa,

 

my son has exon 2 duplication like Bradley. His name is Yiğit.We live in Turkey. He is 5 years old. I have some question to you. please  contact with me,. my e-mail adress ; smrnnc@hotmail.com

with best wishes

semra

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