Living with childhood MS

Children in control

Waiting for a diagnosis can be a worrying time for everyone. But it’s usually best to be honest with your child about what’s happening. It’s your choice how much you tell your child about their diagnosis. This will likely depend on their maturity and ability to take in the information.

When it comes to treatment, involving children in treatment decisions – particularly older children – can help them to feel in control. Children who are included in planning their own treatment are more likely to stick to therapies and medications. 

You could think about ways to give your child responsibility when it comes to taking their medication. For example, children can be involved with the preparation that's needed for injections with some disease modifying drugs. This will give them a sense of control and ‘ownership’ of the process. 

Healthy lifestyle for children with MS

A healthy lifestyle is more important than ever if you have MS. For children with MS, it can help to get into good habits at a young age. Why not get on board as a family – it sets a good example, and everyone might benefit from healthy changes. 

Children with MS keeping active

Exercise can help your child to stay as fit and healthy as possible, and might improve symptoms and their effects. Find something they enjoy and that fits into their busy lives. Anything that involves movement is good. A physiotherapist can work with you and your child to find the best exercises for them. 

Read more about MS and exercise

Eating well

At the moment there isn’t enough evidence to recommend any special diet for all children with MS. But following a healthy diet is important for general health when you have MS. Children can usually get all the nutrients they need from a well-balanced diet. If you can, involve them in preparing meals and be a role model yourself to encourage healthy habits. 

Find out more about healthy eating with MS

Managing mood

Everyone feels down from time to time. But depression, stress and anxiety can be common with MS. If your child is feeling this way, it’s important to talk to their doctor. There are treatments available, as well as self-help techniques that make it easier to cope. 

Something as simple as letting children know there’s support for mental health can make a difference. The NHS Every Mind Matters website lists organisations that specialise in support for children and young people.

We have lots of information on MS and mental health

MS and school

Having MS can disrupt schooling. That might be because of certain symptoms, medical appointments or treatment. 

Some symptoms could make it hard to take part in certain activities. For example, MS can cause problems with memory and thinking. These can be difficult to deal with for someone who’s still in school, where they’re expected to pay attention and take in a lot of information. But schools have a duty to make reasonable adjustments so children can continue to learn. 

There’s support available to help your child get the most out of their education and overcome issues they face.

Find out more about childhood MS and education

MS and family

MS can impact the whole family. It can affect communication, relationships, mood and daily interactions. It’s hard learning how to live with an unpredictable condition.

Children with MS may show a range of emotions and be aggressive, depressed or anxious as a reaction to the diagnosis. Brothers and sisters may feel resentful or jealous of the attention that the child with MS gets. Like they do for anyone, these emotions could show in different ways. 

It can help to have open discussions in the family. Encourage children, including siblings, to ask any questions they have. You might not have all the answers – that’s ok. No one has. Sometimes you might explore the answers together. Maybe it’s a question for the neurologist or MS nurse next time you see them. They might also have details of support groups where you can meet other families, including the charity Contact. 

MS and teenagers

As children get older, it’s natural for them to withdraw a little and to want more independence. They might also want greater involvement in managing their MS. 

Whatever your situation, try to keep the lines of communication going as much as possible. Listen carefully to what your teenager tells you, and look out for signs of depression or problems with memory and thinking. Adapting to life with MS is a lifelong process, but keeping a positive attitude can help you and your child to manage it well. 

Through their MS healthcare team, they might get opportunities to meet online or in person with other young people living with MS. 

Once they’re 18, as well as the MS Society, the charity MS Together has a community of young adults living with MS, offering support through online and face-to-face events. And the charity Shift MS also has an online community of young adults around the world. 

There are some new things you might need to consider in their teenage years, including driving, smoking, alcohol and drugs, sex and relationships.

Driving

Some teenagers with MS can get their provisional driving licence when they’re 16 – a year earlier than most people. They need to be getting the ‘higher’ or ‘enhanced’ rates for the mobility component of one of these benefits: 

• DLA (Disability Living Allowance)
• PIP (Personal Independence Payment)
• CDP (Child Disability Payment)
• ADP (Adult Disability Payment) 

Whenever they start to learn, they’ll need to let the DVLA know they have MS (the DVA in Northern Ireland). You might need to shop around for insurance to get the best deal, but people with MS can get insurance to drive. 

Read the gov.uk driving eligibility information for England, Wales or Scotland 

Read the niDirect information about driving licences in Northern Ireland

Smoking, alcohol and drugs

Smoking, alcohol and drugs can all have an effect on your child’s MS or MS treatments. Alcohol can interact with MS symptom treatments. Smoking can worsen MS and stop disease modifying therapies (DMTs) from working so well. Only specialist doctors are allowed to prescribe medicinal cannabis, and cannabis-based medicines. 

Sex and relationships

MS and MS treatments can affect people’s sex lives and relationships. Some DMTs can be harmful to an unborn baby. A neurologist or MS nurse can explain any particular precautions for contraception around DMTs. Your teenager can talk in confidence with their own MS nurse or doctor. Our confidential MS Helpline offers information and support by phone, email and Facebook direct messaging. 

Getting help for parents and children

It’s important to take care of yourself, as well as your child. There’s support available for you, including:

• our online forums where you can meet other adults with MS in their family
• the charity Contact, which helps find link up other families with disabled children
• our MS Helpline, for anyone affected by MS, including family, friends and teachers
• health and social care professionals who can provide support to your child with MS, as well as the rest of the family
• breaks and holidays which are a valuable opportunity for you and your child to recharge your batteries
• financial support. There might be benefits you can claim on behalf of your child