Nutritional Management

A registered dietician (RD) can help you to evaluate how many calories you need per day, by calculating your resting energy expenditure (REE), using your height, age, and activity level.

  • Maintaining good nutritional status will help to prevent both undernutrition and becoming overweight. This is essential from diagnosis throughout life
  • It is important that your weight or body mass index (BMI) for age is kept between the 10th and 85th percentile on national percentile charts (see resource section)
  • Eating a healthy, well-balanced diet with a full range of food types is necessary for maintaining a healthy body; information for the whole family on eating a well-balanced diet can be found from most national sources, including NHS Live Well ( and other reputable resources in your country but should be discussed with a specialist dietician
  • You should pay extra attention to diet at diagnosis, when starting steroids, when loss of ambulation occurs and when swallowing problems arise
  • Your diet should also be assessed for calories, protein, fluid, calcium, vitamin D, and other nutrients each year
  • Proper fluid intake is necessary for the prevention of dehydration, constipation, and renal (kidney) issues
  • If there is too much weight gained, a decrease in calories and increase in safe physical activity is recommended
  • Gastroparesis, or delayed stomach emptying, can occur as you get older, causing abdominal pain after eating, nausea, vomiting, loss of appetite, and feeling full quickly
  • If you have an unexpected weight loss, it is important to consider that this may be a complication of issues in other systems (e.g. cardiac or respiratory)
  • Issues with swallowing may also effect weight loss. Your dietician should work closely with SALTs to develop eating plans to help you to maintain or gain weight, develop diet changes that may be helpful for you during mealtimes and decide when it may be necessary to evaluate your swallowing