Nutrition is the act or process of nourishing or being nourished. Research has indicated that proper nutrition is one component that can improve the overall quality of life for a person living with Duchenne muscular dystrophy. While there are several considerations regarding caloric consumption, including: physical activity, capability of ambulation, and steroid use, specialists in the field suggest that daily caloric consumption should be 80% of what individuals without Duchenne muscular dystrophy consume. Avoidance of excessive intake overall, salt intake not more than 1500 mg daily, and adequate calcium intake are recommended.
Keep in mind, it’s never too late to start! Meal planning is often an effective means with which to involve all members of the family. Engage support from your Health Care team, including a registered dietitian nutritionist or registered dietitian to develop a plan customized to your individualized needs.
Risk factors for over nutrition include: Decreased caloric intake Decreased resting energy expenditure Decreased physical activity Excessive caloric intake due to increased appetite because of medication Lack of caloric restriction by parents |
Suggested ways to offset these risks include:
– Evaluate glucose metabolism; follow a low glycemic index diet
– Dietary control with the assistance of advice/support from a dietitian
– Limit caloric intake
– Reduce consumption of sugar-containing beverages
– Increase consumption of fruits and vegetables
– Limit the addition of oils and fats
– Use of behavior management techniques i.e. eat slowly and recognize satiety cues
Main causes of under nutrition include: Decreased muscle strength Dysphagia/Swallowing difficulties Gastrointestinal problems (constipation, delayed gastric emptying) Prolonged mealtime Dependent feeding Increased energy requirements because of respiratory failure |
(which typically coincides with disease progression)
There is a high incidence of nutritional difficulties in individuals living with Duchenne muscular dystrophy. To avoid undesirable effects of reduced food intake, collaboration with your/your child’s Health Care Team is suggested. Prior to commencement of a steroid regimen, dietary assessments should be obtained. This is especially important when: the individual is underweight, presence of unintentional weight loss and/or gain, the individual is overweight, a major surgery is scheduled, the individual has a history of chronic constipation, and presence of dysphagia is noted.
1. Start off the day with a protein rich breakfast. AVOID sweets and sugary based food by consuming foods that contain less than 9g sugar/serving
2. Increase water intake. Amount of daily water needs is equal to ½ your body weight i.e. for a person weighing 60 pounds, his minimum water intake should be 30 oz.
3. AVOID foods high in sodium. Don’t add salt and use low sodium food products
4. Grill, Bake, & Broil proteins. Use lean fish and poultry.
5. Include a salad at lunch and dinner
6. Eat less starchy foods – replace with less starchy vegetables
7. AVOID Constipation by consuming adequate water and increasing fiber consumption
Vitamins & Supplements 5
Daily calcium needs are based on actual intake. First step is to collect information on what intake is obtained from food and then determine if sufficient. When under the ideal amount, supplements can be added. It is important to determine the actual from food and then decide if additional is needed. A body can get TOO much calcium so it is imperative to work with your health care team to determine a plan best tailored to your child’s needs.
It is recommended to take a daily multivitamin that includes mineral supplements. Examples include: for young boys, chewable tablets such as Flintstones and for teens- Men’s multi-vitamins.
*Key thing to remember is- Don’t Stress! Start with 1 area, then build from there… *
There are many different supplements for Duchenne patients.
This is one family’s regimen (not developed by a physician) and is listed only as an example. CureDucehenne does not endorse this in any way. Please check with your physician before adding any supplements and/or medications. 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 reduce the bitterness.
UPON WAKING | |
| Haelan 951 | 2 oz |
WITH BREAKFAST | |
| Deflazacort | .9 grams per kilo |
| Q-10 | 100mg |
| MultiVitamin | 2 tablets |
| Green Tea Extract (Caffeine free) | ½ dropper |
| Protandim | 1 pill |
| Arginine | 3 grams |
| Losartan | 50mg |
| Omega 3’s | 1280mg |
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 |
| Calcium | 1200 |
| Vitamin D | 2000 |
| Quercetin | 1000mg |
BEDTIME | |
| Human Growth Hormone | 1.6mg |
The details should be completed following a 3 Day Food Intake Record in collaboration with your child’s Dietitian.
| Calories | Calories/day | |
| Protein | Grams/day | |
| Fluids | Ounces/day | |
| Calcium | Milligrams/day | |
| *Additional Calcium supplement | *when indicated | |
| Vitamin D3 | 1,000-4,000 | International units/day |
| Sodium | 1,500 | Milligrams/day |
| Multivitamin/Mineral
| 1 per day
| Suggested Brand(s): Flintstones Complete Centrum Liquid Centrum Complete |
| *Other supplements | *when indicated |
Click image to enlarge.
What is it?
Fiber is the portion of plant foods that cannot be digested. There are two kinds of fiber, and both are keys to a healthy diet and a healthy digestive system:
- Soluble fiber aids in bulking and moving food through the gut. It forms a gel when mixed with liquid.
- Insoluble fiber does not mix with liquids and passes through the GI tract mostly intact. It is sometimes called “roughage.”
Why do I need to eat it?
Fiber has many important roles:
- Helps maintain regular bowel movements. More fiber can improve both diarrhea and constipation.
- Reduces the risk of developing hemorrhoids.
- Lowers LDL or “bad” cholesterol levels, which lowers risk of heart disease.
- Regulates blood sugar levels in people with diabetes.
- Provides a feeling of fullness, and may help with weight loss.
How much do I need?
The Academy of Nutrition and Dietetics recommends:
- For women, 25 grams per day under age 50.
- For men, 38 grams per day under age 50.
What foods are the best sources?
Plant foods contain fiber, but some more than others. Best choices are:
- Whole grains and high fiber cereals.
- Dried beans and legumes.
- Fruits and vegetables, especially fresh.
What the heck does that stand for?
- Fermentable
- Oligosaccharides (oligo –“few,” saccharide – “sugar”)
- Disaccharides (“two sugars”)
- Monosaccharides (“one sugar”)
- And
- Polyols (these are sugar alcohols)
OK, but what are FODMAPs and who should avoid them? FODMAPs are a type of carbohydrate, or “sugar,” found in certain foods. Carbohydrates give us energy, along with fat and protein. People with irritable bowel syndrome (IBS), a slow moving gut, or other bowel disorder may not tolerate foods with FODMAPS. This is because FODMAPS are not easily absorbed by the bowel.
Symptoms of FODMAP intolerance include gas, abdominal discomfort, distention, bloating, fullness, nausea, and/or pain after eating foods containing FODMAPS.
Carbohydrates that are Considered FODMAPS
Fructans and Galactans:
Fructose
Lactose
Fructooligosaccharides
Galactooligosaccharides
Polyols:
Sorbitol
Mannitol
Xylitol
Maltitol
Foods that do not contain carbohydrates are not a concern. This includes meat, poultry, fish, eggs, butter, oils, and hard cheeses.
Additional Resources
Below are additional resources you may find useful.
Calcium and Vitamin D supplements are recommended by the American College of Rheumatologist Task Force osteoporosis guidelines for individuals taking any dosage of corticosteroids more than a three- month period. Supplementation and dietary sources should be maintained at a total calcium intake of 1,200 mg daily and a Vitamin D intake of 800 IU daily.
It is important to have your child’s height and weight checked regularly.
Things to monitor: weight loss, weight gain, chronic constipation, swallowing difficulties
The following professionals have key roles in Nutrition for boys with DMD:
Gastroenterologist
Dietitian
Nutritionist
Speech-Language Pathologist for Dysphagia
Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management
Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care
Sources Referenced
1 Bushby K, et al. (2009). Diagnosis and management of Duchenne muscular dystrophy, part 1: implementation of multidisciplinary care. The Lancet Neurology, 73-93.
2 Bushby, K. et al. (2009). Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. The Lancet Neurology, 177-189.
3 Estimate Serving Sizes With Household Objects (Or Your Hands…). (2012, February 7). Retrieved from TopsyTasty: http://topsytasty.com
4 From The Diagnosis and Management of Duchenne Muscular Dystrophy : A Guide for Families. (2010).
5 Gloss, D., Moxley, R. T., Ashwal, S., & Oskoui, M. (2016). Practice guideline update summary: Corticosteroid treatment of Duchenne muscular dystrophy. Neurology, 465–472.
6 Godshall, LD, CCHMC, B. (n.d.).
7 Ramos-Platt, Neurologist, L. (n.d.).
8 Simona, S., Francesca, M., Maurizio, M., Sophie, G., Sciacco, M., & Susanna, E. (2017). Nutritional Challenges in Duchenne Muscular Dystrophy. Nutrients.
9 University of Virginia Health System: Digestive Health Center. (2014, October). Low FODMAP Diet. Retrieved from www.GInutrition.virginia.edu
10 University of Virginia Health System: Digestive Health Center. (2015, October). High Fiber. Retrieved from www.GInutrition.virginia.edu
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