Spinal muscular atrophy type 2

There is little information in the literature regarding nutrition requirements in spinal muscular atrophy (SMA).^[1] While parents and clinicians have found that there are many benefits from good nutrition for children with SMA, there is little evidence to suggest that any particular type of diet is useful in SMA; and, some diets may in fact be harmful.^[2][3] Despite frequent use of an elemental diet, a recent study reviewing the available literature on nutrition in SMN-related SMA did not find any well-designed prospective studies investigating this diet.^[1]

It is known that growth, body composition and energy requirements are likely different in people with SMA, but further research is needed before nutritional guidelines can be developed.^[1] As of now, children with SMA need individualized nutritional management to address their growth and nutrition requirements.^[1] For this reason, it is important to meet with a registered dietitian and/or physician who has experience working with people with SMA.^[2] These health care providers can consider each individual’s challenges and preferences.^[4]

CureSMA has a helpful booklet on their website called Nutrition Basics - Fostering Health and Growth for Spinal Muscular Atrophy. This booklet provides information about many of the principles, challenges, and management strategies of nutrition in SMA.

Specialty treatment centers often have healthcare professionals of various specialties who work together. SMA centers or clinics (or those more broadly focusing on neuromuscular disorders) provide comprehensive care for people with SMA and typically have dietitians experienced with SMA to provide nutritional support.

The Muscular Dystrophy Association's website allows you to "Find MDA in Your Community" by entering your zip code. They also have an online form where you can request services, including obtaining information about clinics. You can also contact another SMA disease advocacy organization for information about clinics or knowledgeable dietitians in your area.