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Children (0-12 years) Health & Wellbeing

Children (0-12 years) Health & Wellbeing

Last updated: October 2024

Your GP or local hospital consultant can refer your child to a specialist neuromuscular centre:

Your team may refer to:

These were written before the new disease-modifying drug treatments became more widely available.  Even then, recommended standards of care for children, young people and adults varied and were based on:

  • whether they could sit, stand or walk
  • whether their breathing was affected by their SMA
  • what other daily living activities they could manage.
A 3-year project is now underway to update these standards for the UK. Clinicians and patient reps are reviewing all aspects of care and management. You can find out more and keep up to date with recommendations at SMA Care UK > 

You can follow the links to find:

The individual chapters in the guide:

As all children respond to treatment and develop differently, the impact of SMA on their  muscle strength  and joints will vary. Their SMA is, though, likely in some way to impact on their ability to keep up with daily activities.

Read more >

As all children respond to treatment and develop differently, the impact of SMA on the muscles they use for breathing will vary.  There are different ways of helping to manage breathing challenges.

Read more >

Impact of SMA on Eating and Diet

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’.

Management and Care

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:

 

Conversations with Healthcare Professionals

Maxwell (who has SMA Type 2) spoke to Dr Graeme O’Connor (Research Lead for Dietetics at GOSH) about diet and nutrition in SMA:

Recorded: November 2023

 

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

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.

Impact Of SMA On The Spine, Hips & Bones

SMA commonly causes bone and muscle (orthopaedic) problems. Even with drug treatment, SMA can weaken the muscles which support the spine.  Without this support, the spine can be pulled by gravity and curve:

  • When the spine starts to curve sideways into a ‘C’ or ‘S’ shape it is called a scoliosis.
  • When the spine bends forwards it is called, a ‘kyphosis’.

It is estimated that as they grow:

  • 60 – 90% of ‘non-sitters’ and sitters’ develop a curvature
  • 50% of ‘walkers’ develop a curvature.

It is also common for ‘non-sitters’ and ‘sitters’ to have unstable hips which may affect one hip or both. They are also at higher risk of bone fractures.

Management and Care

Chapter 4 Orthopaedic Management   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:

Spinal Surgery

Your child’s spine will be monitored. If their spine is curving beyond a certain point, surgery may be suggested. If the clinical team has raised this and you want to discuss it with your child, you may find it helpful to look at the Spine, Hips and Bones Section written for teenagers.

The development of these skills in all children impacts hugely on their ability to join in with family, friends, school and nursery.

Our webinar with Giovanni Baranello (Consultant Neurologist at GOSH) and Alison Felton (Speech & Language Therapist at Alder Hey) focuses on children who have SMA Type 1. It covers research, developmental signs, communication aids, recommended strategies that may be needed and how local and specialist teams can help:

Alison also suggested a number of useful resources:

What is possible for my child?

There are now three drug treatments funded by the NHS for SMA, though not all are options for all children.

Though SMA affects each child differently and responses to treatment vary, it is widely agreed that for all three treatments, the earlier they are given, the better the potential outcomes. But children do have to be well enough to start (or continue) treatment. This may mean a delay, pause, alternative option or stopping if risks outweigh potential benefits. Your child’s team will talk with you about the different treatments, whether or not your child is eligible, and the potential risks and benefits for your child.

Our page on Drug Treatments for Children who have 5q SMA tells you about the treatments, how they work and which children may have access. There are links to pages with more details.

A family experience of receiving treatment

In this NHS Video, parent Charlie talks about their experience of Rupert’s diagnosis, his Zolgensma™ treatment, and the following months:

Recorded January 2022

What outcomes have families seen?

Many families share their experiences on social media. For some these can be useful. However, no two families have the same personal circumstances. No two children are impacted in the same way by SMA. What treatment is most appropriate for them, how they will react and what the outcomes are may vary considerably.

It is probably fair to say that, on the whole, families who have chosen treatments and seen positive outcomes post their ‘stories’ publicly. So do talk through what you see on social media with your medical team.

All children experience a range of emotional ups-and-downs as they navigate our complex world. Disabled children can face additional stresses and challenges. They may become anxious, frustrated or angry about the barriers they face.

Read more >

Your child’s team should work with you to develop an Emergency Health Plan (EHP). This records the treatment you wish your child to receive if there is an emergency or if their health deteriorates. Although these discussions can be difficult, they are important and should be had before a child is unwell. If your child has breathing and swallowing difficulties you would expect a more detailed plan.

The plan can be reviewed at any time. You can change your mind about what intervention the EHP records that there should be.

With your permission, this plan can be shared with professionals supporting your child, so that everyone is aware of your wishes. This can include ambulance services. You should have your own copy of your child’s EHP so that you can give it to hospital services if you are away from your home area.

Often, staff in Accident and Emergency (A & E) have never come across SMA. We have worked with clinical experts to produce:

Essential information for emergency services when assessing and caring for a child who has SMA Version 1 image

 

Essential Information for Emergency Services when Assessing and Caring for a Child who has Spinal Muscular Atrophy >.

 

Though drug treatments have been life changing, some children remain vulnerable to the potential for life threatening illness and complications.

An Anticipatory Care Plan (ACP) sets out what actions should be taken if a child’s condition changes in this way. It is agreed by parents and the team caring for their child.

Planning ahead means that parents (and when appropriate, their child) will have thought through how and where their child will be cared for, rather than being faced with difficult decisions at a time when they are likely to feel exhausted and confused.

Together for Short Lives / Care Planning in Advance > gives more information including some of the questions to consider when making a plan.