Most people are diagnosed with MS between the ages of 20 and 40, but the number of people being diagnosed under the age of 18 is increasing. This is due to better diagnosis through the use of MRI scanning, as well as through increased awareness among health professionals that children can get MS.
The medical term often used for childhood MS is paediatric MS or paediatric onset MS (POMS). MS is rare in children, and difficult to diagnose as there are other conditions that have similar symptoms. This means that it can take some time to get a diagnosis, which may be frustrating or worrying for the whole family.
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. Adults who are diagnosed may look back and remember certain symptoms they had as a child as being an early part of their MS.
PUDDLS, the Paediatric UK Demyelinating Disease Longitudinal Study, started in 2011. 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. You may be asked to contribute your experience to the study. This will be anonymous and will not affect the care you receive.
The causes of MS are not well understood but are likely to be the same for adults and children. A person might have a genetic tendency to get MS, but would also need to be exposed to some environmental triggers, such as a lack of sunlight, a viral infection or cigarette smoke. Before puberty, equal numbers of boys and girls are diagnosed with MS. After puberty more girls are diagnosed than boys which suggests that the hormonal changes that happen at puberty could also affect susceptibility.
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. The environmental triggers are also widespread, and many people are exposed to them without getting MS. This means that it is not currently possible to predict who will get MS or to take steps to prevent it happening. It is not your fault if you have 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 symptoms in children are:
These symptoms occur in other conditions so, if you are worried that you or your child might have MS, it is important to get the correct diagnosis. If you have 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 have some other cause.
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 very small number of children are diagnosed with progressive MS.
MS is different for each person, whatever their age, so it’s not possible to predict how your 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 and other aspects of thinking and language affect about a third of children very early in their MS. 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.
There are effective treatments for MS in childhood that can reduce the risk of having more relapses, and also reduce the accumulation of disability.
It is natural to be concerned about the future and to wonder how much MS may affect your 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 life. This time and energy could be spent in a more positive way on something that is important right now.