Standards of Care for Duchenne

Medication     Supplements
Steroids Many experts believe that Deflazacort has side effects that may be slightly less than Prednisone; the negative is that you can’t buy it in the United States. You can order it through Masters Marketing in the United Kingdom. Side effects are possible weight gain, short stature, and behavioral issues which tend to lessen over time. Also, Duchenne boys may have weak bones due to decreased activity, and steroids can exaggerate the bone loss.

Preventative Heart Medicine It is suggested by some physicians that boys begin a therapy of ace inhibitor or losartan around the age of eight, to help protect the heart from the damage that comes with Duchenne.
    There are many different supplements for Duchenne patients.  This is one family’s regiment (not developed by a physician) and is listed only as an example.  We do not endorse this in any way.  Please check with your physician before adding any supplements or drugs.  Doses are based on body weight. Please note: Haelan is very costly and tastes bitter; it should be given on an empty stomach with a drop of honey to kill the taste.
Upon waking
Haelan 951 2 oz.
 
With breakfast
Deflazacort .9 grams per kilo
Q-10 100 mg.
MultiVitamin 2 tablets
Green Tea Extract
Caffeine free
½ dropper
Protandim 1 pill
Arginine 3 grams
Losartan 50mg
Calcium/Vit D 1000
 
Afternoon
Arginine 3 grams
Creatine 5 grams
Glutamine 6 grams
 
With dinner
CLA 1 gram
HMB 2 grams
Alpha Lipoeic Acid 600mg
Q-10 100mg
 
Bedtime
Human Growth Hormone 1.6mg
Nutrition    
Since Duchenne boys already have weakened muscles, it is very important to not increase the stress on them by adding excess weight. Depending on the boy's appetite, controlling the calorie intake may be a challenge, but it is imperative to keep them slim.Avoid salty foods since steroids increase water retention. Maintain a lean meat and fish diet with steamed vegetables and fresh fruit. Avoid processed food and sodas. Extra calcium is needed, so increase nonfat milk products. The more the family joins in on this healthy diet, the better the outcome for the boy.    
Excercise/Activity    
We felt early on that maintaining muscle cells was important, though there is no scientific evidence to support this. Walking down stairs or downhill is actually more damaging to the muscle than going up. It is hard to monitor a kid's activity throughout the day, and the boys need to have fun and play with their friends, so finding a healthy balance of activity is important.Teaching kids to rest before they get tired is advisable. Using a large stroller or electric scooter, depending on age, for long distance travel will help them maintain their energy and strength. It has been our belief that a Duchenne boy should never be allowed to play until he is exhausted.    
Physical Therapy    
Duchenne causes the muscles to tighten and develop contractures. Nightly stretching helps maintain flexibility. We recommend stretching after a warm shower or bath. The most important muscles to stretch are the hamstrings, heel cords, calves, and wrists. A physical therapist that has extensive knowledge of Duchenne should develop the regimen. A massage table really helps perform the therapy accurately. Lastly, it is important to stretch every night, no matter how tired or busy you or your child is.    

 

Find Out More
Find more detailed Duchenne care guidelines on the TREAT NMD site to access this complete guide   Learn more about physical therapy and how it can help for Duchenne