Choices

Children with MS

MS in children, or paediatric MS, refers to children and teenagers under the age of 16 who are diagnosed with multiple sclerosis.

Around three to five percent of people diagnosed with MS are children.

The most common type of MS in children is relapsing remitting MS. Progressive forms of MS are seen in children, but are very rare.

Diagnosis

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 growing up.

Sometimes the child may not be able to describe what they are experiencing.

The most common alternative diagnosis to MS is acute demyelinating encephalomyelitis (ADEM) which presents very similarly to MS.

To find out more about ADEM, see our Choices leaflet on Is it MS?

The diagnostic process for a child is the same as for an adult. Only a neurologist can diagnose MS after a series of tests which may include an MRI and a lumbar puncture. MS cannot be diagnosed by a blood test, although your child’s neurologist or GP may conduct a series of blood tests to exclude other conditions.

A child may be seen by a paediatric neurologist, or they may be seen in an adult neurology clinic. Paediatric neurologists tend to practice in specialist children’s hospitals.

Symptoms and treatments

The symptoms of MS in children are the same as symptoms in adults. Some of the disease modifying drugs for MS are licensed for use in children, such as beta interferon and glatiramer acetate.

Common symptoms of children with MS are problems with memory and thinking, and fatigue. Again there are medications to treat such symptoms but these may not have been licensed for use in children, and it would be the responsibility of your neurologist to prescribe these. Your child would be monitored carefully while taking any disease modifying drugs or other medications.

For more information, see our Choices leaflets on Disease Modifying Treatments, Symptoms and Visual Symptoms.

School

As a parent you may be concerned about your child needing time off from school for hospital appointments, or if they have a relapse. You may be worried that fatigue or cognition problems will affect your child’s learning.

You can talk to the Special Educational Needs Coordinator for your child’s school to ensure your concerns are discussed and adjustments made to ensure your child’s participation and inclusion in learning and school activities.

You can talk to the school about whether your child may benefit from the provision of a Statement of Special Education Need (in England, Wales and Northern Ireland) or a Coordinated Support Plan (in Scotland).

Your child may also be entitled to free school transport. Contact the transport coordinator at your local council to enquire about this.

Family

A child’s diagnosis with MS can affect the whole family. As parents you will have many questions about MS, and what it means on a day-to-day basis, or the future.

Your child will also have questions, or may exhibit a range of emotions or challenging behaviours such as aggression, depression and anxiety.

Other siblings also need support to understand their brother or sister’s diagnosis.

Your MS Nurse will support you with any answers you need. You can also call MS-UK on freephone 0800 783 0518 for information and advice.

Benefits

Supporting a child with a disability can have a financial impact. There are some benefits you are entitled to claim, including Disability Living Allowance (DLA) and Carer’s Allowance.

For more information on benefits or the Blue Badge scheme, call MS-UK on freephone 0800 783 0518, for information and advice.

If your child has mobility problems, you may be able to apply for a Blue Badge from your local council, even if you are not in receipt of DLA.

Updated December 2014