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Children – Eating & Diet

Children – Eating & Diet

Last reviewed October 2024

As all children respond to treatment and develop differently, the impact of SMA on their muscles will vary. The main eating and diet related problems associated with SMA can be:

  • difficulty swallowing
  • weight management
  • movement of food through the digestive system

These challenges may be common for children who are ‘non-sitters’ and children who are ‘sitters’, but they are rare for children who are ‘walkers’.

There are different ways of helping to manage these eating and diet challenges. Your child’s clinical team will assess your child and, if needed, will involve a speech and language therapist (SALT) and dietitian in their care. They will have a full discussion with you about best care and management.

Chapter 5 Nutrition, Growth and Bone Health  of the Family Guide to the 2017 International Standards of Care for SMA (SoC) summarises the key recommendations that were made then. Although this provides a useful reference point, a 3-year project is now underway to update all these standards for the UK. Any updates to this advice will be published once this area of care has been reviewed by the SMA Care UK > project. Your child’s clinical team will be up to date with any changes.

If your child has been recently diagnosed, you may also find helpful information in whichever of these SMA UK guides is the ‘best fit’ for your child:

 

The Blends Project is a resource about food for feeding tubes. It has been recommended to an SMA family by their dietitian. It is designed to help you find out about blended diet and decide if it is a good choice for your child and your family. It was developed at Nottingham Children’s Hospital with a group of parents who use blended diet. Their experiences and top tips are highlighted throughout.

Conversations with Healthcare Professionals

 

 

 

 

In 2022, SMA Europe ran workshops on nutrition. You can watch the videos on their YouTube channel.