Nutrition Tips and Meal Ideas for Patients with Duchenne Muscular Dystrophy

Kennedy's disease

Hello, Nutritionist: I am a 16-year-old patient with Duchenne Muscular Dystrophy.
I need to use a ventilator, weigh about 26 kilograms, and have a small appetite, which often leads to bloating.
I drink Ensure milk and occasionally eat other foods, mainly consuming liquids and avoiding rice.
What should I eat that would be better for me? Do you have any recipes? Thank you!

Kai Kai, 10~19 year old female. Ask Date: 2009/09/25

Dr. Xie Huimin reply Nutrition

Dear Kai Kai,
First, it is important to determine if you have any issues with malnutrition, as you appear to be underweight.
I would like to know about your muscle condition and whether your serum albumin levels are low based on your blood tests.
If there is a significant problem with malnutrition, more aggressive nutritional therapy may be required.
Prolonged bed rest and the use of a ventilator can lead to bloating; in addition to medication, it is advisable to frequently change positions, move, and massage to promote normal gastrointestinal motility.
Ensure that you are consuming Ensure, which is a balanced nutritional formula.
Generally, if you are tube feeding Ensure, you should aim for 2000 cc per day to meet your daily nutrient requirements.
If this amount is insufficient, you may need to supplement with a multivitamin.
Besides Ensure, there are many other balanced nutritional formulas available, both in powder and liquid forms, but the quantity should be assessed by a nutritionist.
You can also prepare liquid diets using regular foods.
For example, a potato soup can be made with 100g of potato, 1 boiled egg, 5g of butter, 7g of protein supplement, 5g of flour, 5g of sugar, and 1g of salt, yielding about 300 cc per cup with approximately 300 calories.
A carrot soup can be made with 40g of carrot, 160g of rice porridge, 5g of canola oil, 14g of protein supplement, 20g of flour, and 1g of salt, also yielding 300 cc per cup.
Any ingredients that can be made into a liquid form are acceptable, but be mindful of portion sizes to ensure they are adequate.
It is advisable to gradually increase your food intake by having smaller, more frequent meals.
I recommend consulting with a nutritionist to evaluate your dietary needs and calculate the recommended daily intake to identify any deficiencies, allowing for appropriate adjustments.
Sincerely,
Hui-Min Hsieh

Reply Date: 2009/09/25

More Info

Duchenne Muscular Dystrophy (DMD) is a severe form of muscular dystrophy that primarily affects boys and leads to progressive muscle degeneration and weakness. As a patient with DMD, it is crucial to focus on nutrition to maintain overall health, manage symptoms, and support muscle function as much as possible. Here are some nutrition tips and meal ideas tailored for individuals with DMD, especially considering your specific situation of being on a liquid diet and experiencing abdominal bloating.

Nutritional Considerations
1. Caloric Needs: Patients with DMD often have increased caloric needs due to muscle wasting and the energy required for daily activities. It's essential to ensure that you are consuming enough calories to meet your energy requirements. Since you are currently consuming a liquid diet, consider using high-calorie liquid supplements like Ensure or other nutritional shakes that provide balanced macronutrients.

2. Protein Intake: Protein is vital for muscle maintenance and repair. Aim for a protein-rich diet, which can be challenging with a limited appetite. Incorporate protein sources into your liquid meals, such as adding protein powder to smoothies or shakes. Foods like yogurt, cottage cheese, and eggs can also be blended into smoothies for added protein.

3. Healthy Fats: Including healthy fats can help increase caloric intake without significantly increasing the volume of food. Consider adding sources of healthy fats like avocado, nut butters, or olive oil to your smoothies or soups.

4. Fiber and Digestive Health: Since you experience bloating, it’s essential to manage fiber intake carefully. While fiber is important for digestive health, too much can exacerbate bloating. Focus on soluble fiber sources, such as oats and bananas, which are gentler on the digestive system. You might also consider digestive aids or probiotics to help with bloating.

5. Hydration: Staying hydrated is crucial, especially if you are on a liquid diet. Ensure you are drinking enough fluids throughout the day. Water, herbal teas, and electrolyte drinks can help maintain hydration levels.

Meal Ideas
Here are some meal ideas that are nutritious, easy to consume, and can help manage your symptoms:
1. Smoothies: Create nutrient-dense smoothies using a base of yogurt or milk (dairy or non-dairy), and add fruits like bananas, berries, or mangoes. You can also include spinach or kale for added vitamins and minerals. For extra calories, add nut butter or protein powder.

2. Soups: Pureed soups can be an excellent option. Consider making a creamy potato and leek soup or a butternut squash soup. You can blend cooked vegetables with broth and add cream or milk for a richer texture.

3. Puddings and Custards: These can be a great way to get calories and protein. You can make a simple custard using eggs, milk, and sugar, or try chia seed pudding, which is high in fiber and omega-3 fatty acids.

4. Oatmeal: If you can tolerate it, oatmeal can be a good breakfast option. You can blend cooked oats with milk and add fruits or nut butter for flavor and nutrition.

5. Protein Shakes: If you find it challenging to eat solid foods, consider high-protein shakes that can be easily consumed. Look for options that are specifically designed for muscle health.

Additional Tips
- Small, Frequent Meals: Since you have a small appetite, try to eat smaller meals more frequently throughout the day rather than three large meals. This can help manage bloating and ensure you are getting enough nutrients.

- Consult a Dietitian: It’s highly recommended to work with a registered dietitian who specializes in neuromuscular disorders. They can provide personalized meal plans and help monitor your nutritional status.

- Monitor Symptoms: Keep track of how different foods affect your bloating and overall comfort. This can help you identify which foods to avoid and which ones work best for you.

In conclusion, focusing on a balanced diet rich in calories, protein, and healthy fats while being mindful of digestive comfort can significantly impact your quality of life as a DMD patient. Always consult with healthcare professionals for tailored advice and support.

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