Good nutrition is essential to health and growth. But proper nutrition is complex, especially for children with SMA.
There are no studies that conclusively prove one type of diet is best for individuals with SMA, so each individual and family must make decisions based on their own needs.
Since we are still waiting for clinical studies, there is much we still need to learn. Generally, parents and dietitians have found that children with SMA receive many benefits from good nutrition, including:
- Improved growth.
- Better breathing.
- Illness prevention.
- Improved motor function.
- Better quality of life.
Other factors can also affect nutrition decisions for those with SMA. These include:
- Over or undernutrition.
- Feeding issues, such as difficulty chewing and swallowing.
- Aspiration, which happens when small amounts of food or liquid enter the windpipe instead of the stomach.
- Abdominal problems, including diarrhea, bloating, and vomiting.
- Gastroesophageal Reflux Disease, also know as GERD or acid reflux disease.
- Yeast overgrowth.
- Low or high blood sugar.
Care in Nutrition
Nutrition decisions should be made after consulting with a registered dietitian nutritionist or doctor who understands SMA. Growth rates for individuals with SMA differ from growth rates for healthy individuals. Weight and length/height must be charted, along with other body measurements over time, to assess risk for undernutrition or overnutrition.
A doctor or nutritionist will also give consideration to each individual’s challenges and preferences. In addition to recommending the proper amount of food intake, the nutritionist may recommend other diet alterations, including:
- Eating smaller meals.
- Changing to a low-fat diet for those at risk for GERD.
- Choosing softer foods for those with weakness in chewing and swallowing.
In some cases, particularly for individuals with SMA type I, a feeding tube may become necessary. There are a wide range of feeding tubes and feeding types, and specific considerations for each of them. Your doctor or specialist can help you make the right decision.
- Acute Nutritional Guidelines for Caregivers and Hospital Staff
- 2015 Conference Oral Feeders Presentation
- 2015 Conference Tube Feeding Presentation
- Cure SMA Nutrition Basics Care Series Booklet
- 2010 General Nutrition Guidelines for SMA Children
- Jaw tightness Issues Story
- Observational Study of Caloric and Nutrient Intake
- Overview of the Amino Acid Based Diet
- Potty Training Article
- Pre/Post Operative Guidelines for Nutritional Care
- SMA Calories and Nutrition Guidelines
- SMA Type I Gastrostomy Feeding Guidelines
- University of Utah Pediatric Motor Disorders Research Program webpage