Feeding Issues in SMA

Many people with spinal muscular atrophy (SMA) experience nutrition-related challenges. There currently is not enough research data available to reach conclusions about the best nutritional advice for people with SMA. So, it is important for SMA patients to work individually with an experienced dietitian/nutritionist to prevent possible nutrition-related problems.

Dietitians/nutritionists will work closely with caregivers, parents and healthcare assistants to find the most appropriate diet for each patient.

Feeding issues

According to the type and severity of SMA, children may have chewing and/or swallowing difficulties (dysphagia) and choking problems.

Feeding and swallowing difficulties are more common in children with SMA type 1 and in some with SMA type 2.

Key symptoms of feeding difficulties in weaker infants with SMA include prolonged mealtimes, fatigue with oral feeding, and choking or coughing during or after swallowing.

Swallowing may be difficult due to the limited range of jaw movement, trouble moving food around the mouth with the tongue, decreased bite force, and fatigue in the muscles involved in chewing. Also, poor control of the muscles used to move the head may affect the safety of swallowing.

These difficulties may result in poor and slower weight gain, especially in children with intermediate SMA type 2, with the risk of aspiration of food or liquids and developing aspiration pneumonia, a lung infection that develops as a result of food, liquid or vomit being aspirated into the lungs.

Assessing feeding and swallowing issues

The assessment of feeding issues is usually performed by a speech or occupational therapist. The therapist often performs a feeding case history after observing the patient during mealtimes. This includes the examination of oral structures needed for efficient feeding and the assessment of the positioning and head control during feeding and swallowing.

A videofluoroscopic swallow study can be administered in case the initial assessment brings up concerns regarding swallowing safety. This study is a diagnostic test of aspiration and also a way to decide on helpful therapeutic strategies, such as adapted food texture and head positioning. The study is conducted at the radiology or X-ray department of a hospital where different foods and drinks are mixed with barium and consumed by the patient. The barium makes the food and drinks show up on the X-ray. (Barium is not harmful and won’t stay in the body for very long.)

Management of feeding issues

The objective of managing feeding issues is to reduce the risk of aspiration during swallowing, and to optimize the efficiency of feeding while promoting enjoyable, nutritious meals.

Changing food consistency and optimizing oral intake are appropriate treatment strategies. A semi-solid diet can be used to compensate for poor chewing and to reduce the length of mealtimes. Thickened liquids also may protect against aspiration.

Altering positioning and seating, and use of specialized equipment, can help improve the ability to self-feed and also may increase the safety when swallowing.

Feeding tubes may be an option for children with SMA when there is the possibility of a deficient caloric intake or the safety of oral feeding is compromised. It is important to regularly assess children’s nutritional status for a better choice of interventions.

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