[MotoSook]

Ok guys. I know there are some doctors on this board and there are folks here who may also have some first hand experience with MD.

I have a nephew who has the gene defect. I’ve been researching this and there is no cure, nor any adequate treatments. My nephew has Duchenne's muscular dystrophy, and apparently the only treatment is anti-inflammatory corticosteroid medication (prednisone) which may help improve muscle strength and delay the progression of the MD.

There are side effects of corticosteroid that my sister and her husband are not comfortable with.

Anyone have experience with corticosteroid as administered to children under 12 yrs old?

Here is what the Mayo Clinic has to say about it:

Muscular dystrophy

Treatment

There's currently no cure for any form of muscular dystrophy. Research into gene therapy may eventually provide treatment to stop the progression of some types of muscular dystrophy. Current treatment is designed to help prevent or reduce deformities in the joints and the spine and to allow people with MD to remain mobile as long as possible. Treatments may include various types of physical therapy, medications, assistive devices and surgery.
Physical therapy
As muscular dystrophy progresses and muscles weaken, fixations (contractures) can develop in joints. Tendons can shorten, restricting the flexibility and mobility of joints. Contractures are uncomfortable and may affect the joints of your hands, feet, elbows, knees and hips.
One goal of physical therapy is to provide regular range-of-motion exercises to keep your joints as flexible as possible, delaying the progression of contractures, and reducing or delaying curvature of your spine. Using hot baths (hydrotherapy) also can help maintain range of motion in joints.
Medications

Doctors prescribe medications to treat some forms of muscular dystrophy:

•Myotonic dystrophy. Medications that may be used to help manage the muscle spasms, stiffness and weakness associated with this condition include mexiletine (Mexitil), phenytoin (Dilantin, Phenytek), baclofen, dantrolene (Dantrium) and carbamazepine (Tegretol, Carbatrol).

•Duchenne's muscular dystrophy. The anti-inflammatory corticosteroid medication prednisone may help improve muscle strength and delay the progression of Duchenne's MD.

Assistive devices
Braces can both provide support for weakened muscles of your hands and lower legs and help keep muscles and tendons stretched and flexible, slowing the progression of contractures. Other devices such as canes, walkers and wheelchairs can help maintain mobility and independence. If respiratory muscles become weakened, using a ventilator may become necessary.

Surgery
To release the contractures that may develop and that can position joints in painful ways, doctors can perform a tendon release surgery. This may be done to relieve tendons of your hip and knee and on the Achilles tendon at the back of your foot. Surgery may also be needed to correct curvature of the spine.

Other treatments
Because respiratory infections may become a problem in later stages of muscular dystrophy, it's important to be vaccinated for pneumonia and to keep up-to-date with influenza shots.