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Originally appeared: January 2020 Newsletter

Nutrition: NUTRITIONAL CARE FOR NON-SITTERS (TYPE 1)

The information in this section is based on the updated standards of care for SMA. You should not rely on it as an alternative to medical advice from a healthcare professional.

For non-sitter (Type 1) infants, swallowing safely is one of the most important aspects of care as muscle weakness can result in inhaling food and respiratory infections. If swallowing is affected, using a short-term nasogastric or nasojejunal tube is recommended until a long-term gastrostomy tube can be fitted.

Your child's diet and how it is provided should be tailored to your child's needs. Drinking enough, plus bowel-regulating agents, probiotics and motility medications are recommended to ease symptoms of constipation and gastrointestinal dysmotility.

Nutrition: NUTRITIONAL CARE FOR SITTERS (TYPE 2)

The information in this section is based on the updated standards of care for SMA. You should not rely on it as an alternative to medical advice from a healthcare professional.

For the best care, nutrition evaluations are recommended every three to six months for younger children and every year for older children affected by sitter (Type 2) SMA. Children with sitter (Type 2) SMA often have chewing difficulties and get tired with eating. As a result, swallowing safely and the risk of inhaling food can be a concern.

Feeding tubes are often used to provide extra nutrition rather than total nutrition and they should be considered based on the care needs of your child. Your child may be at risk of becoming overweight as they grow older due to their reduced physical activity. As a result, their diet should be changed as appropriate.

If your child is constipated (depending on how severe it is) fiber supplements, probiotics and bowel-regulating agents can be used to improve symptoms.

Nutrition: NUTRITIONAL CARE FOR WALKERS (TYPE 3)

The information in this section is based on the updated standards of care for SMA. You should not rely on it as an alternative to medical advice from a healthcare professional.

Problems with swallowing and feeding difficulties are rare in those with walker (Type 3) SMA. The main concern for those with walker (Type 3) SMA is the risk of becoming overweight or obese as this condition can reduce mobility and may increase the risk of weight-related illnesses such as high blood pressure and diabetes.

REREFENCES:

Finkel R, Mercuri E, Meyer O et al. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics. Neuromuscular Disorders. 2018;28(3):197-207.

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