Multiple sclerosis (MS) is a condition that affects the central nervous system (CNS). The CNS consists of your brain and spinal cord, and as the name suggests it plays a central role in the regulation and management of key bodily functions (1).
MS in children, otherwise known as Paediatric MS, generally refers to anyone under the age of 16 who has been diagnosed with the condition.
While MS affects around *150,000 adults in the UK it is rarely seen in childhood, and is especially rare in children under the age of 12 (2). It is estimated that globally at least 30,000 children under the age of 18 are living with MS, with the UK figure being around 250 (3).
The signs and symptoms of MS are dependent upon where demyelination has happened in the brain or central nervous system. As with adults, there are a wide variety of symptoms that a child with MS could develop. Symptoms may include (2)
In comparison to adults with MS, children who are affected can experience more frequent relapses, however, they generally recover more completely thereafter (4). Studies have also found that at least one-third of children with Paediatric MS experience impaired cognitive functioning which tends to deteriorate over time (5).
More information
Our MS Symptoms Choices information booklet offers more information on the common symptoms associated with MS.
Diagnosis of MS in children can be difficult, as many of the common symptoms of MS such as fatigue, pain, memory problems and lack of concentration, can be attributed to other conditions or associated with the impact of growing up (6).
A child will usually be seen by a paediatric neurologist once MS is suspected. To assess the central nervous system, the neurologist will conduct a physical examination and take a full medical history. Only a neurologist can give a diagnosis of MS.
More neurological tests will likely be needed to provide an MS diagnosis, and these are summarised below.
These are taken to rule out other conditions or nutrient deficiencies being the root cause of your child’s health issues. Some of these may have symptoms that are very similar to MS.
This scan is used to identify any areas of the brain or spinal cord that may have damage indicative of MS. An MRI scanner consists of a large doughnut-shaped magnet with a tunnel in the centre, which along with radio waves is used to take pictures of the brain or spine.
These are very simple and painless electrical tests which measure the time it takes for the child’s nerves to respond to stimulation. Visual evoked potentials (VEP) are most commonly used in the MS diagnostic process. It involves a conducting gel and electrodes being applied to the head and face. Audio and visual stimuli are then used and the outcomes are assessed to identify any areas of concern.
A lumbar puncture is a procedure where a small sample of cerebrospinal fluid (CSF) is taken from the base of the spine. CSF is the fluid that surrounds and protects the brain and spinal cord. This is then analysed for any abnormalities, such as the presence of certain proteins which can indicate inflammatory activities such as myelin damage.
To receive a diagnosis of MS, a child will usually have experienced an acquired demyelinating syndrome (ADS), which is a demyelinating episode and often a precursor to MS. It includes conditions such as optic neuritis, transverse myelitis and clinically isolated syndrome (CIS). They may be affected by multiple symptoms prior to experiencing a second demyelinating event, usually within two years, to meet the criteria required to be diagnosed with MS (7).
While there are additional considerations when diagnosing MS in children in comparison to adults, such as eliminating the possibility of demyelinating syndromes that can appear in childhood, there are also many similarities. For example, when new lesions appear in follow-up MRI scans, there is a strong possibility of an MS diagnosis in children. Evidence of dissemination in time and space is also a key consideration (8). This is when nerve damage has occurred at different points in time and in different areas of the CNS respectively.
Interestingly, a recent study which was undertaken in Germany found that children and teenagers may show a range of early signs and symptoms in the five years prior to MS diagnosis. These early signs can include obesity, sensory changes, and vision problems, which could serve as clues for identifying MS earlier in young people (9).
There appears to be no substantial differences in sex ratio, familial recurrence, relapse rate, ethnicity or clinical symptoms at the time of diagnosis between children and adults with MS. The most common type of MS in children is relapsing remitting MS (RRMS) where symptoms can come and go in a relatively unpredictable way. Progressive forms of MS are seen in children, but instances are very rare (3).
Our Diagnosis Choices booklet provides more detailed information about how MS is diagnosed.
Although there is no cure for MS as yet, research suggests that careful attention to managing the condition, including implementing medication and lifestyle interventions, can result in a child’s improved educational performance and overall quality of life (10).
NHS England has produced a service specification titled ‘Multiple Sclerosis Management Service for Children’ which covers the provision of services for children with MS or MS-like conditions. This guidance states that once a child is diagnosed with MS, they should have access to a multi-disciplinary team (MDT) who are experienced in the treatment and care of children with MS.
The team will be led by a paediatric neurologist who has expertise in MS. It should also include MS clinical nurse specialists, clinical psychologists, neuropsychologists, occupational therapists and physiotherapists. Once under the care of a specific hospital, a patient should be able to contact their team during normal working hours (11).
In preparation for adulthood, each child and their clinical team will start planning for the transition to adult services from age 12, with the aim of them being transferred just before they reach 18 years of age. Patients will then be seen by their local or most appropriate adult MS service (11).
While this guidance has been developed by NHS England, it provides an example of how public health authorities in other areas of the UK may approach care for paediatric MS patients.
There is a range of disease modifying therapies (DMT) that are used to modify the course of MS itself, reduce the number of relapses and delay long-term progression. Some of these are suitable for those under the age of 18. Acute relapses can be treated by a course of steroids which can help those affected to get through the relapse as quickly as possible.
All medications for MS will be prescribed by a neurologist who will talk to children and their families about eligibility, their options and further considerations on an individual basis (2).
Lifestyle choices can play a significant role in the management of MS, in both children and adults. These may include exercise, dietary approaches, complementary therapies and psychological support. Your child’s clinical MS team can provide guidance on the potential benefits of these approaches, considering their individual circumstances.
The link between vitamin D and MS is thought to be both environmental and genetic in nature. It is widely believed that these factors are associated with an elevated risk of developing MS, although more evidence is required for a better understanding.
The team at Great Ormond Street Hospital for Children (GOSH) in London currently advise their paediatric MS patients to take 1,000 international units (IU) of vitamin D per day by way of supplementation. They also provide regular monitoring of their patient’s vitamin D levels to ensure that dosages are kept to an optimum, and safe, level (12).
Our range of Choices information booklets cover many areas of MS management including DMTs, diet and supplements, complementary therapies, exercise and more.
As a parent, you may be concerned about your child needing time away from school or college for hospital appointments. For example, if they are having a relapse or are experiencing issues with MS symptoms. You may also be worried that fatigue or cognitive problems will affect your child’s learning. These concerns are completely natural. However, help is at hand.
In the UK every mainstream school must have a Special Educational Needs Coordinator (SENCO). Their main duty is to ensure that any child with specific needs is supported by the school. By speaking to the SENCO at your child’s school you can discuss possible solutions which will ensure your child’s continued inclusion in learning and other school activities.
You may also wish to talk to the school about whether your child may benefit from the provision of a formal plan, which takes your child’s specific and wider needs into account. In England this may be in the form of an Individual Education Plan (IEP) and an Education, Health and Care Plan (EHCP), however there are differences in other areas of the UK. In Scotland your child may be eligible for a Co-ordinated Support Plan (CSP), in Wales an Individual Development Plan (IDP) and a Statement of Special Educational Needs (SSEN) is available for children who reside in Northern Ireland (13).
These plans should reflect your child’s goals for the future, as well as their current needs. If your child is attending or planning to attend college or university, it is suggested that you contact the particular educational establishments of interest to talk about the support they can offer, prior to applying for a place.
It is also important to note that your child may be entitled to free school transport. Contact the transport coordinator at your local council to find out more.
Later in this booklet we provide details of organisations that can offer focused support and guidance on special educational matters in your area of the UK.
Supporting a child with a disability can have a financial impact on a family’s finances and living circumstances. It may be helpful for you to know that there are some welfare benefits which you or your child may be entitled to claim.
These benefits can include Disability Living Allowance (DLA) in the UK except Scotland or Child Disability Payment (CDP) in Scotland only, which are available to children under the age of 16.
DLA and CDP provide financial support towards the extra costs of bringing up a child with a disability. They can be regarded as gateway benefits given that claimants who are in receipt of them, their parents or carers, may be eligible for additional financial support. For example, Carers Allowance (CA) for people living in the UK except Scotland and Carer Support Payment (CSP) for residents of Scotland only, are benefits for unpaid carers which you could claim if your child is eligible for DLA or CDP.
Furthermore, if you are claiming benefits such as Universal Credit (UC) you may be eligible for an increase in payments if your child receives DLA or CDP. You will also be exempt from the benefits cap.
If your child receives the higher rate of the DLA or CDP mobility component they will automatically qualify for a Blue Badge. They may also qualify under the assessed route depending on their circumstances (14).
Our Benefits and MS website resource provides a summary of the benefits mentioned above and more. It also offers links to benefits calculators which will help you to better understand your household’s entitlement.
More information, resources and support for young people with MS and their families can be found below.
The MSIF have produced an informative booklet titled ‘Childhood MS: A guide for parents’. This booklet covers many topics of concern regarding paediatric MS including how MS can affect children, cognitive issues, education, getting the best from health and social care services and much more.
The charity MS Trust have launched a YouTube channel called ‘MSTV’ which is for young people who are affected by MS. Other useful content includes stories from children affected by MS detailing their experiences and links to valuable resources.
Navigating the education system can be complex and challenging at times. If you need support to know your child’s rights in relation to educational issues, there are organisations that can support you.
The charity Contact offers information, advice and support for families with disabled children around the UK. Their support is wide-ranging and covers issues such as education, finance, work and childcare, health and social care, and has an active online community. Contact has links to many local support groups across the UK and works to improve parent carer participation.
The Local Offer provides information about local services and support available to children and young people in England who have special educational needs and disabilities (SEND). This encompasses education, health, and social care.
Each local authority will have their own statement of the services that they can offer. You can find details of your local authority’s Local Offer via their individual websites.
www.gov.uk/find-local-council
There are Information, Advice and Support (IAS) services in every local area in England which provide dedicated and impartial advice to young people, their parents, and carers, particularly in relation to education. The IASS Network (IASSN) is funded by the Department for Education and is based within the Council for Disabled Children in the National Children’s Bureau.
www.councilfordisabledchildren.org.uk
This is a charity that offers free and independent information, advice and support in the field of SEND law. Their website hosts a range of resources and guides which are designed to extend awareness. They also provide tribunal support and a helpline.
www.ipsea.org.uk
This service is operated by Coram Children’s Legal Centre. It provides specialist advice and information on child, family and education law to young people in England, their parents and carers.
www.childlawadvice.org.uk
Under ASL, local authorities in Scotland provide information about local services available to children and young people who have SEND. This encompasses education, health and social care. Each local authority will have their own statement of the services that they can offer. You can find details of your local authority’s ASL support via their individual websites.
www.mygov.scot/local-council-website
This organisation is funded by the Scottish Government andmanaged by the organisation Children in Scotland. Their mission is to share knowledge and expertise to help children, young people, parents, carers and professionals. This includes guidance regarding ASL and where to find local authority ASL contacts.
www.enquire.org.uk
A specialist hub which provides free legal advice on all aspects of Scottish law relating to children and young people. This includes issues such as education, health and social care.
www.sclc.org.uk
A charity that provides free legal advice and representation for children and young people who live in Scotland.
www.clanchildlaw.org
ALN is an umbrella term used for the system of supporting children and young people who have SEND and live in Wales. This encompasses education, health and social care. You can find details of your local authority’s ALN support via their individual websites.
www.gov.wales/find-your-local-authority
This is a charity whose main aim is to advance the education of people in Wales and support their inclusion. It offers free, independent information, advice and support for children and young people with SEND, their parents, carers and guardians.
www.snapcymru.org
All children in Wales have rights under the United Nations Convention on the Rights of the Child (UNCRC). This includes the right to education, the right to the best possible health care, and the right to be safe. The office of the Children’s Commissioner for Wales offers this free and confidential helpline to advise children, young people and those who care for them of their rights, this includes educational entitlement, social services and healthcare access.
www.childcomwales.org.uk/about-us/childrens-rights-advice-and-assistance-team
SENAC is a charity that provides confidential and independent guidance on the Northern Ireland special educational needs system.
www.senac.co.uk
This organisation works to protect the rights of all children living in Northern Ireland. In particular it focuses on those who are the most disadvantaged, especially children who are living with disabilities and have special educational needs. Their services extend to providing free legal representation at special educational needs and disability tribunals (SENDIST).
www.childrenslawcentre.org.uk
