I'm curious to know if anybody has a child with DMD that is overweight. If so, have doctors been helpful with early intervention to keep the weight down? My son is 15, quite overweight, we have tried for years, starting in the early years to get some help with this. The doctors where I am have never been real proactive with any aspect of this disease. Just looking for some info if anyone has any. Thanks

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Just wondering...Is he on Prednisone or Deflazacort?
No Christine he is not, never was. First it was never really suggested strongly, second, we chose not to because of the weight issue. Being he could never really run or ride a bike, obviously, exercise was limited. He is a boy that likes to eat, what one doesn't, although I know they are out there, lol. My husband is a big guy, so was his mom, so unfortunately genes are there. When I first asked the nurse at the MD clinic we went to she said to me "we don't bother these kids about their weight, you know as well as I do when it comes to the end, they are all underweight" I'm guessing she felt comfortable saying that because I'm a nurse. Couldn't have been more hurtful. We got some help from our family doc and did take him to the dietician at our local hospital that gave counseling a try. I'm cautious with cooking/preparing food, but I'm not here all the time either. It's so difficult
Paul and Sheila Wellstone MD Center at the University of Minnesota researched the treating obesity in Duchenne boys a few years ago.


The principle investigator was/is Dr. Scott Crow.

Paul and Sheila Wellstone MD Center at U of M contact info...


Try giving them a call and see if they can do anything.
Topiramate Treats Obesity in Two With Duchenne MD
Greg Carter, a physical medicine and rehabilitation specialist who co-directs the MDA clinic at the University of Washington Medical Center in Seattle, recently reported that two boys with Duchenne muscular dystrophy (DMD) lost significant weight while being treated with topiramate, a drug used to treat epilepsy and migraine headaches and that often reduces appetite.

One boy is a 5-foot, 6-inch, 15-year-old whose weight was 196 pounds and in whom dietary management alone had failed. He began losing weight two weeks after starting topiramate, while maintaining a diet of 800 calories a day.

After 18 months of topiramate at a variety of dosages, ending at 50 milligrams a day four days a week, his weight was down to 145 pounds.

The second is a 5-foot, 3-inch, 13-year-old with DMD whose weight had reached 250 pounds. After dieting failed to reduce his weight, he started taking bupropion, an antidepressant known to suppress appetite. After four months of bupropion, which failed to reduce his weight or appetite, he started taking topiramate, stabilizing his medication dose at 50 milligrams twice a day and his diet at 800 calories a day. After about a year, his weight is down to 147 pounds.

“These cases provide anecdotal evidence that topiramate is well tolerated and may help patients with DMD to lose weight,” Carter writes in Muscle & Nerve, published online March 18.

Carter commented, “Although this is a very preliminary report, the findings are encouraging. Because obesity is a significant clinical problem for boys with DMD and caregivers as well, further study is clearly warranted.

“In the meantime, I would encourage parents of obese boys with DMD to ask their MDA physicians about a trial of topiramate. A dose of 50 milligrams a day should be well tolerated and be enough to induce a decrease in appetite. There should be some effect within several weeks.”
Thank you for your response, I did read about this in a Quest magazine a few years back. Ironic thing is that my son has been on Topamax for about 4 or more years now, it helps greatly with his involuntary muscle spasms of his legs. He takes 30mg in the morning, 15 at night. 800 calories is not much, it should be for kids that are not active, but at this point my son would be a bear. He never seemed to have a loss of appetite with the Topamax. He seems to have slowed his eating a bit, mostly I think because of the onset of cardiomyopathy and some difficulty breathing at times.

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