Less than one in every 100 people with multiple sclerosis (MS) will experience symptoms before the age of 10 but between two and five in every 100 people experience their first symptoms before the age of 18. Not all of them will have been diagnosed at that age so they may have looked back and recognised certain symptoms as being an early part of their MS.
Under the age of ten, equal numbers of boys and girls are diagnosed with MS. After puberty, more girls are affected than boys which mirrors what happens in the adult population. 98 out of every 100 children diagnosed with MS have the relapsing remitting type and may be offered disease modifying drugs to control the number and impact of relapses.
Multiple sclerosis in children is exceptionally difficult to diagnose as there are other conditions in children which have very similar symptoms. This means that it can take some time to get a diagnosis which may be frustrating.
NHS services for children with MS are provided in different ways in different areas of the UK. Your child may need to travel to specialist children's hospitals, which can be some distance away, for their appointments. Support is available for all the family though the MS healthcare team, GP and school or college.
We will use the words “child”, “children” and “childhood” to cover both younger children and adolescents up to the age of 18. The medical term often used for childhood MS is paediatric MS or paediatric onset MS (POMS).
The information on this page has been written with parents in mind.
If you are a child or young person who has been diagnosed with MS, or are worried that you might have MS, you might like to follow these links to get more information:
Can children get MS?
Most people are diagnosed between the ages of 20 and 40 but the number of people being diagnosed under the age of 18 is increasing. This is probably due to better diagnosis particularly as MRI scanning techniques have improved. In addition, the possibility of MS in children is increasingly recognised so health professionals are more likely to consider this as an explanation for symptoms experienced by this age group.
Research suggests that less than one in every 100 people with MS will experience symptoms before the age of 10 but between two and five in every 100 people experience their first symptoms before the age of 18. Not all of them will have been diagnosed at that age so they may have looked back and recognised certain symptoms as being an early part of their MS.
PUDDLS, Paediatric UK Demyelinating Disease Longitudinal Study, started in 2011 and will last at least five years. It is looking at MS and similar conditions in childhood in the UK and should give a better idea of who gets MS in childhood, what the initial symptoms tend to be, and how the condition changes over time.
Why do children get MS?
It is not known why some people show symptoms in childhood but most people have onset of their MS in early adulthood and some only experience symptoms later in life.
The causes of MS are not well understood but are probably the same for adults and children. It seems that a number of different factors add up to trigger the condition including factors that are in the environment. MS is not inherited in a predictable way like some conditions and most people have no previous family history of MS. Some genes make it more likely that someone gets MS but having these genes is definitely not enough on its own. This means that it is not possible to predict who will get MS or to take steps to prevent it happening.
Before puberty, equal numbers of boys and girls are diagnosed with MS. After puberty more girls are diagnosed than boys which suggests that changes in sex hormones play a part in susceptibility.
How is childhood MS diagnosed?
If you are worried about possible MS symptoms in your child, you should talk to their GP about your concerns. It can be useful to take a short written summary which lists their symptoms and includes when symptoms appeared, what impact they had and whether they got worse, stayed the same or got better, either partly or completely. It is also important to let your child explain in their own words what they have experienced.
The GP can refer your child to a doctor who has specialist expertise in health conditions that affect children (a paediatrician). They may refer them on to a doctor who also specialises in conditions of the nervous system (a paediatric neurologist) and/or MS (an MS specialist neurologist). The doctors will ask about your child’s history of symptoms and may arrange tests for a whole range of conditions so that some possibilities can be ruled out straight away.
The most common tests used for MS diagnosis are an MRI scan of the brain and/or spinal cord and possibly a lumbar puncture. Sometimes a test called evoked potentials is used to measure the speed of messages sent along the nerves.
A group of related conditions
MS can be difficult to diagnose as there are other conditions in children which have very similar symptoms. The most common are ADEM (acute demyelinating encephalomyelitis) and NMO (neuromyelitis optica). Transverse myelitis and optic neuritis (ON) are also possibilities but there are a number of others including vitamin B12 deficiency.
Children with MS often experience bad patches of symptoms which begin suddenly then usually get better over time and may go away completely. These are called relapses, episodes, attacks, flare ups or exacerbations. If a child has experienced only one episode, they may be given a diagnosis of clinically isolated syndrome (CIS). Some children never go on to experience a second attack in their lifetime so would never be diagnosed with MS.
Initially, a child may be given a diagnosis of demyelinating disease, which is an umbrella term for a collection of related conditions, until the specific one can be identified. Demyelinating conditions all cause damage to the protective covering (myelin sheath) that surrounds nerve fibres in the brain and spinal cord.
A survey in the UK in 2009-2010, identified 125 children, aged between 1.3 and 15.9 years, who had experienced their first evidence of demyelinating disease. Out of these, almost a third (40) were diagnosed with ADEM, two had NMO and two thirds (85) had clinically isolated syndrome. The latter could be sub-divided into 30 with optic neuritis, 25 with transverse myelitis and 30 with other first symptoms.
Sometimes it is a matter of waiting to see how symptoms develop in order to tell the difference between several possible conditions and give a definite diagnosis. This can be frustrating and worrying but is quite a common experience. In appointments, it can be good to ask ‘what happens next?’ so you are always clear about the way forward. You and your child might like to keep diaries of symptoms so you can keep track if symptoms come and go. You can share a summary of your diaries with the neurologist or nurse at your next appointment.
Not only is MS difficult to differentiate from other conditions, there is also a low level of general awareness amongst doctors that MS can begin in childhood which, combined with only a small number of paediatric neurologists with expertise in MS, can also increase the time to get a diagnosis.
What are the symptoms of childhood MS?
Everyone experiences different symptoms depending on which parts of the brain or spinal cord have been affected. They may begin suddenly although this is not always the case. Common ones are:
- Blurred vision
- Numbness, tingling or other unusual sensations usually in the arms or legs that don’t go away
- Difficulties with thinking which may include needing more time to work something out or difficulty thinking of the right word even though it feels like it’s on the tip of the tongue
- Fatigue which is a feeling of exhaustion, either physically or mentally, that is out of proportion to the activities recently undertaken
- Problems with moving which affect just one side of the body, perhaps a hand, arm or leg
- Difficulties with balance or coordination
- Weak leg muscles, tremors or spasms
- Anxiety and depression can be MS symptoms or be a consequence of dealing with MS.
These symptoms occur in other conditions so, if you are worried that your child might have MS, it is important to get the correct diagnosis. If your child has already been diagnosed with MS, you shouldn’t assume that any new symptoms are due to MS but get them checked out in case they are due to some other cause.
Are there different types of MS?
Almost all children (98 in every 100) who have been diagnosed with MS have a type called relapsing remitting MS (RRMS). In this type of MS, symptoms can appear quite suddenly (a relapse) but then go away again (remission) either partly or completely. This pattern of symptoms is unpredictable which can make planning difficult and take some getting used to. However, there are disease modifying treatments which can reduce the number and severity of relapses.
A small number of children are diagnosed with progressive MS.
How will my child’s MS develop?
MS is different for each person, whatever their age, so it’s not possible to predict how your child’s MS will develop. Most information written about adult MS will also apply to children but there are a few differences. For example, children with MS usually make a complete recovery after their first attack but often experience more relapses than adults.
Difficulties with memory, attention, reasoning and other aspects of thinking and language affect about a third of children very early in their disease. These symptoms, which are known as cognitive difficulties, often get more troublesome with time and may affect performance at school. About half of children with MS experience anxiety or depression and three quarters have fatigue.
It is unusual for children to have significant physical disability, such as walking difficulties, around the time of diagnosis. Physical disability usually increases more slowly in children than in adults but, as symptoms began at an early age, specific levels of disability are generally reached at an earlier age than for people whose symptoms began in adulthood.
It is natural to be concerned about your child’s future and to wonder how much MS may affect their life. Many children with long term conditions live very fulfilling lives that include going to university, having a good job and a family. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of their life. This time and energy could be spent in a more positive way on something that is important right now.
How is childhood MS treated?
MS is a life long condition. At present, there is no cure for MS but there are good options to manage it well. Drug treatments, therapies and other management techniques can make a difference but having a healthy lifestyle also plays a part.
Sometimes an ongoing relapse is treated with steroids at a high dose, either as a pill or through a drip, but only for a few days. This calms the immune system and can speed up recovery. However, the amount of recovery will be the same with or without steroid treatment.
Disease modifying drugs (DMDs) are a group of drugs which can reduce the number and severity of relapses. There is also some evidence that they can slow down the progression of the disease which is usually measured as a build-up of disability over time.
11 drugs are licensed for use in adults in the UK. Each of the drugs has different characteristics such as how often they are taken, how well they work, possible side effects, any particular risks associated with the drug, any tests or monitoring required and how they are given (a pill, self-injected or by infusion through a drip).
Copaxone and the beta interferon group of self-injected drugs have been licensed for some years and have been widely and successfully used to reduce relapses in children with MS. Children diagnosed with clinically isolated syndrome may also be offered one of these treatments. Children may be started on a low dose which is increased gradually over four to six weeks.
There are other disease modifying drugs which have been licensed more recently. They may be offered to children especially as some of them are pills which can be easier to take than the self-injected drugs.
It is important that the drug is taken as recommended by the doctor and that doses are not missed. It can take six months or longer to know if the treatment is working but, if not, a switch to another drug may be recommended.
In 2015, the Association of British Neurologists (ABN), updated their guidelines for the prescribing of DMDs. They recommended that young people aged between 16 and 18 are treated according to their guidelines and that children under 16 should be assessed and treated in specialist clinics, preferably under a combined team that includes adult and paediatric neurologists with a specialist interest in MS.
It is important that children receive treatment for their symptoms so that they can be as well as possible. For some symptoms, drug treatment may be suggested but other approaches may be recommended instead of, or alongside, drug treatments. Health professionals who may be involved include:
- occupational therapists who may run fatigue management programmes
- neuropsychologists who can assess any cognitive symptoms, liaise with the school and suggest ways to manage difficulties with thinking due to MS
- Counsellors or clinical psychologists who can discuss the impact of MS on daily life and how to deal with it. They can suggest ways to manage any anxiety, depression or complex feelings about being diagnosed with MS
- Physiotherapists who can help with walking difficulties or problems with balance or tremor
It is important that children with MS have a healthy way of life as it will make it easier for them to deal with any relapses or symptoms if they are as well as possible. This includes eating a balanced diet, getting some exercise and managing stress as well as possible plus taking part in activities with family, friends and at school. Your MS team can support you by making suggestions.
What support is there for children with MS and their families?
It is important to be open to discussing the effects of MS symptoms with your child. Together you can think through what would be helpful and access the support available. Your child should be allowed to give their own viewpoint and to attend meetings, for example with the school, whenever possible.
Paediatric MS services in the NHS
NHS services for children with MS are provided in different ways in different areas of the UK. Some children may be diagnosed at a local hospital but then referred to another centre which has a specialist MS team. Their MS team may be a paediatric MS team or a mix of paediatric and adult services, for example, a paediatric neurologist and an MS nurse whose caseload is mostly adults, or they may be supported entirely within adult MS services.
Children should have a review of their MS by their neurologist about once a year. They may have more frequent contact with their MS nurse, sometimes called a neurology nurse, although not everyone has access to an MS nurse. The nurse is usually the first person to contact if you have any concerns or questions. They will be able to refer your child to other services if needed, according to their particular symptoms. These could include a physiotherapist, occupational therapist or clinical psychologist.
As teenagers, children will move into the care of the adult MS team if they have previously been seen within a paediatric service. This often happens between the ages of 16 and 18 but may begin earlier. The paediatric healthcare team will support you and your child to make this move as smooth as possible. This is also the time when a young person should be encouraged to take more personal responsibility for their health, just as in other aspects of their life, and the family can play an important role in supporting them to achieve this.
It may take some time to adjust and come to terms with MS being part of your lives. You can be supported in this by:
- neuropsychologists who can assess your child for any cognitive symptoms, liaise with the school and suggest ways to manage difficulties with thinking due to MS
- Counsellors or clinical psychologists who can discuss the impact of MS on daily life and how to deal with it. They can suggest ways to manage any anxiety, depression, complex feelings about being diagnosed with MS or the impact on the family.
Every child and every family is different. It is common for children to experience a range of powerful emotions or reactions when diagnosed with MS. You will have your own response which may be different from other members of your family. You may be worrying about the future, about how your child is dealing with their MS or how those around you will respond. It is important that you are provided with support as well as your child and, although you may not think of yourself as a carer, there is support available from carers’ organisations.
MS is an unpredictable condition and living with this uncertainty can be difficult for all the family. As it is not possible to predict how your child’s MS will develop over time, the advice from health professionals, and those who have lived with MS for some time, is to take each day as it comes and try not to worry about what might, or might not, happen.
Children often enjoy being part of a group and spending time with others who do the same activities and have the same outlook as they do. If MS affects what your child can do or how they feel about themselves, they may feel different and perhaps isolated. At first, friends or classmates may not understand MS, how the symptoms affect your child and their need for rests during the day, time off school or other adjustments. Your child can be supported in explaining MS to teachers and other students. For many children with MS, friends are an important source of support.
Fatigue can lower mood and motivation so pacing activities is important to avoid a ‘boom and bust’ rollercoaster of physical and mental energy. An occupational therapist or MS nurse will be able to suggest ways to manage activities and energy levels and may run a fatigue management course.
Support in school
It is important to talk to the school as soon as possible about any health issues that your child experiences and to let them know as soon as there is a diagnosis of MS. Your MS nurse should be able to support you in explaining about MS and how symptoms affect your child. There will probably be children in the class with other long term conditions, such as asthma or diabetes, who are being supported by the school to manage their condition well.
Children with MS often have cognitive symptoms such as difficulties with memory, attention, reasoning and other aspects of thinking and language. This can make school work more challenging especially if they are under pressure to do well, for example, at exam time. “Invisible” symptoms like fatigue or pain can be difficult for others to see or understand.
MS does not always affect studying but you and your child will need to talk to the Special Educational Needs Coordinator (SENCO) or Inclusion Officer at the school to see what support is available. A neuropsychologist can assess your child’s needs, recommend ways to minimise the effect of symptoms and liaise with the school.
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- Presse Medicale 2015;44(4 Pt 2):e153-8. Summary Treatment of multiple sclerosis in children and its challenges.
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Last reviewed: 21 June 2016
This page will be reviewed within three years