Childhood onset 5q SMA affects each child differently and its impact varies greatly. When your child’s medical team is discussing and deciding with you what's the best care and management for your child, they think not only about your child’s ‘clinical classification’ (such as SMA Type 1, 2 or 3), but also what physical milestones your child has reached. For simplicity, these milestones are sometimes used to group children as:
- non-sitters - those who are unable to sit
- sitters - those who are able to sit but not walk
- walkers – those who are able to walk
Impact Of SMA On Breathing
The muscle weakness caused by SMA can affect the muscles for breathing. Breathing problems may be common for children who are ‘non-sitters’ (usually diagnosed with SMA Type 1) and children who are ‘sitters’, but they're rare for children who are ‘walkers’.
Management and Care
There are different ways of helping to manage these breathing challenges. When your child’s medical team is discussing and deciding with you what might be needed for your child, their reference and yours will be Chapter 6 Breathing (Respiratory and Pulmonary Care) of the family-friendly Guide to the 2017 International Standards of Care for SMA
www.smauk.org.uk/international-standards-of-care-for-sma This is for those with 5qSMA (Types 1, 2, 3 or 4).
Respiratory - Cough Assist for Younger Children
SMA UK Host Martyn Sibley talks to Lisa Edel (Specialist Respiratory Physiotherapist - Great Ormond Street Hospital for Children NHS Foundation Trust) to share some of the latest information and insights around cough assist for younger children.
Recorded: Feb 2021
Non-Invasive Ventilation for Younger Children
Dr Elaine Chan (Consultant Respiratory Paediatrician) and Gary Rendle (Non-Invasive Ventilation Clinical Nurse Specialist) from GOSH talk to Martyn Sibley about non-invasive ventilation for young children, including the potential benefits, why it might be needed and assessments involved. They also look at a machine and explain how it works. Recorded: Feb 2021
You may also find helpful information in whichever of the following SMA UK ‘Looking after your child...’ guides is the ‘best fit’ for your child (see below).
Last reviewed / updated: August 2021
Next review due: August 2022
'Looking after your child...’ Guides
- Looking after your child who has SMA Type 1 - or is a 'non-sitter'
This guide includes: safe and comfortable positions for your child; how to support their breathing, feeding and movement; at home and out and about; support and other resources - read more.
- Looking after your child who has SMA Type 2 - or is a 'sitter'
This guide includes: supporting your child's posture, movement and mobility; breathing and eating; transport; support and other resources - read more.
- Looking after your child who has SMA Type 3 - or is a 'walker'
This guide includes: supporting your child's exercise and mobility; breathing and healthy eating; support and resources - read more.