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Standards of Care

Standard of Care in SMA

What do experts recommend for the care of children with SMA?

To address this question, a group of experts in the care of patients with SMA developed the Consensus Statement for Standard of Care in Spinal Muscular Atrophy (SMA). SMA advocates created a Family Guide of this Consensus Statement to be a resource for families affected by SMA. The Family Guide recommends important topics that families can discuss with doctors and therapists regarding the care of children with SMA.

Role of Exercise

The role of exercise in spinal muscular atrophy is to assist in improving flexibility, function, independence and quality of life. There is no evidence to support traditional strength training. Therefore it is often best for children with SMA to exercise by practicing the movements and tasks they want to perform throughout the day. We call this type of practice functional exercise. It can consist of any movement or position one would like to strengthen in order to improve their activities of daily living, for example rolling, reaching, sitting and maybe even walking. These activities are dependent on age, amount of neuromuscular involvement, and developmental stage.

It is extremely important to maintain our range of motion, or the amount of movement each of our joints has. If we do not move our joints throughout their full range of motion, we run the risk of becoming “tight”. This “tightness” can lead to the development of fixed muscles, tendons, or ligaments. We call this fixed tightening contractures. Contractures can be a result of immobility and inactivity, which puts children with SMA at high risk!

Range of motion exercises, positioning techniques and exercise in the form of practicing everyday activities are an important part of the exercise program. Check with your physical and occupational therapists to ensure that you are performing appropriate types and amounts of exercise.

Many devices exist to help children with SMA move better, more often, safer and more independently. We call these products adaptive equipment. Adaptive equipment can be in the form of wheelchairs, braces, or communication systems. To find the most appropriate adaptive equipment, see a physical or occupational therapist for an equipment evaluation.

Nutritional Needs for SMA

The children with Spinal Muscular Atrophy (SMA) require complete nutrition-but not too much. Each child has a constant need for protein, carbohydrate, fat, minerals, and vitamins. These provide energy and nutrients for growth and physical functions. There are recommended daily allowances of all of these nutrients. However, it is important that the amount of energy that is provided in food for each child is coordinated with the amount of energy that he is able to expend. This will depend on the child’s metabolism and activity level.

It is important that the check-up of each child include a weight and height, taking into consideration the muscle mass. This evaluation should look for both under-nutrition and over-nutrition. Over-nutrition or over-weight can become a problematic burden to weakened muscles, especially the respiratory muscles. Routine nutrition support check-ups can help to balance nutritional need.