What to Do to Help Improve Well-Being
The Importance of Good Nutrition
As DMD progresses, nutritional issues also change and should be monitored and addressed. During childhood, especially when steroids are taken and wheelchairs are being used, there is a risk for obesity. A change in your child's body weight can affect the strength and activity of respiratory muscles. For example, excess weight can place extra pressure on already weak respiratory muscles and impede breathing. There are things you can do to help:
- Have a registered dietitian nutritionist (RDN) on your team to help monitor and support good nutritional status
- Avoid being underweight or overweight; both are harmful to respiratory health
- Eat well-balanced meals, with the right amounts of fiber and fluid
- Watch vitamin and mineral levels, especially vitamin D and calcium levels
- Ask your doctor or RDN before taking supplements to see if it is appropriate
Gastrointestinal and nutritional management for DMD
Boys with DMD should be assessed regularly by a registered dietitian nutritionist to address their unique dietary needs. They often have gastrointestinal or nutritional complications, including weight gain or loss, dietary or nutrient imbalance, fluid imbalance, low bone density, swallowing dysfunction and mandible (jaw) contracture. These nutritional imbalances can negatively affect the respiratory, skeletal muscles and cardiac systems. In the later stages of DMD, there's a greater chance of becoming underweight. Muscle strength weakens which can make it hard to swallow and prolongs the time it takes to eat a meal (longer than 30 minutes), both of which can reduce the amount of food a person eats.
Based on their findings, the registered nutritional dietitian will design a healthy balanced diet, with optimum intake of calories, protein, fluid, and micronutrients, especially calcium and vitamin D for your needs. If weight loss persists, a feeding tube (called a gastrostomy tube or g-tube) might be something to think about. Talk to your care team to see if a tube is a consideration.
Recently the US Centers for Disease Control and Prevention (CDC) in conjunction with the TREAT-NMD network for neuromuscular diseases, the Muscular Dystrophy Association, and Parent Project Muscular Dystrophy (PPMD) has updated the guidelines for DMD care considerations.
The following charts adapted from these guidelines show what you can expect from a registered nutritional dietitian through the disease stages of DMD:
At diagnosis to Late non-ambulatory
At Early ambulatory to Late non-ambulatory
At Late ambulatory to Late non-ambulatory
Symptoms of DMD and treatment options
- Weight loss and dehydration
- Moderate and severe dysphagia
Using Cough Assist Regularly
Using cough assist on a regular basis, not just when you feel sick, can benefit respiratory health. Your doctor may recommend cough assist be done daily (like physical therapy for the lungs) to help maintain a clear airway and as a way to prevent the airways from getting blocked with mucus and the lungs from becoming restricted. There are two ways to assist a cough: