Nutrition for Duchenne 6, 7

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

Food Intake Record

Click image to enlarge.

Use child’s hand along with this quick guide to gauge portion sizes.

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.

Full article

Additional information on steroids

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

View guide

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management

Full article

Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care

Full article

Are you looking for a physical therapist who is specially trained to care for your loved one with Duchenne?

Find CureDuchenne Cares Certified PTs across the nation

Patient Registry

Enroll here to make sure you’re alerted and aware of the latest pharmaceutical treatments for Duchenne muscular dystrophy that become available as research progresses every day.

REGISTER NOW
REGISTER NOW

Inspire Others

Have a story to tell that will inspire or a resource to share that would be helpful to the Duchenne community?

CONTRIBUTE

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

Please be advised that the contents within the CureDuchenne site include a compilation of articles, advisements, and references from the community.  The intent of this shared content is to serve as a point of reference for informational purposes. Please refer to your health care provider(s) for your individualized, specific care management needs.

The CureDuchenne website may contain links to external websites that are not provided and/or maintained by or in any way affiliated with CureDuchenne. Please note that CureDuchenne does not guarantee the accuracy, relevance, timeliness, or completeness of any information on these external websites.