Multiple Sclerosis in Children - Part 2

More about Multiple Sclerosis in Children. If you are reaching this page first, and would like to read Part 1, click here. And there is also a Part 3 if you'd like to go there next.

According to the NMSS

About 8,000 to 10,000 children under age 18 in the US are diagnosed with multiple sclerosis. This statistic comes from The National MS Society. This equals about 3 to 5% of those living with MS. Some say the number may be as high as 10%.

UPDATE: As of 2020-2022, there are about 31,000 children under the age of 18 that have MS around the world. This means that 1.49 children out of every 100,000 children have been diagnosed with multiple sclerosis. That number is probably under reported though because only 53 of the 125 countries in the study answered the survey. (MS International Federation - Link opens in a new window)

It may seem as though multiple sclerosis in children is increasing nowadays. But it may have been just as likely for them to develop it years ago. With technology like MRI's available now, it is easier to diagnose the disease earlier. 
Many pediatricians are still not familiar with multiple sclerosis in children. For one, they just don't expect to see it in children.

If you have a history of MS in your family and suspect that your child might have multiple sclerosis, let your pediatrician know. Either way, they will most likely refer your child to a neurologist for a more in-depth exam.

If anything, they may be able to rule it out. And if your child does have it, there are disease modifying treatments which can be started earlier to manage the symptoms and slow its progression.

Type of Multiple Sclerosis in Children

Most children diagnosed with pediatric MS develop relapsing-remitting MS (RRMS), which is the most common form in both children and adults. About 98% of children with MS experience this type. It is characterized by relapses followed by periods of partial or complete recovery or remissions.

Children with RRMS often experience more frequent relapses than adults, but they also tend to recover better from these episodes. Early signs such as optic neuritis (painful vision loss) and transverse myelitis (spinal cord inflammation leading to weakness or numbness) may be indicators of pediatric MS.

While pediatric MS is still rare and affects less than 5,000 children and teens in the U.S., it presents unique challenges due to their young and developing nervous systems. Treatment multiple sclerosis in children focuses on managing relapses, reducing inflammation, and slowing disease progression.

The medications for children are similar to those that are prescribed for adult. Other ways that your child's healthcare team will use to manage their MS are lifestyle modifications, physical therapy, and treatments that help them cognitively. These all play important roles in helping your little ones maintain their quality of life.

Multiple Sclerosis in children - the symptoms

As I said earlier, symptoms, such as trouble walking may not show up for as many as 10 years. The earlier the onset of MS in children, the slower the disease usually progresses. However, there may be more disability as they reach adulthood and their multiple sclerosis progresses.

Most of the symptom's children experience are similar to those in adults. They can vary widely, including vision problems, muscle weakness, fatigue, difficulty with balance, and cognitive challenges. There are a few symptoms that rarely occur in adults. Lethargy or abnormal drowsiness, and seizures are more likely to occur in children.

In children with MS optic neuritis can happen very early, sometimes even before the age of 2. Having an episode of optic neuritis doesn't always mean that a child will develop MS. If an MRI shows lesions, then the chance is a little higher that they will.

Coordination and balance problems may also be an issue as we mentioned earlier. Ataxia, or the inability to maintain balance while walking, is as common in children as it is in adults.

Doing the things children do

Multiple sclerosis doesn't keep children from going to school. (Although a severe exacerbation might). They're able to play and participate in sports and other activities when they are in remission. As they get older, they can also get jobs and eventually get married and have children.

Just as many adults lead normal lives, having MS at a young age shouldn't stop you from encouraging your child to pursue their dreams. (Or you, if you are a teenager living with multiple sclerosis). If you have questions, talk to your child's healthcare provider about any concerns you may have.

How much should I tell my child?

As a parent with a younger child who has been diagnosed, it's hard to know how much to tell them. Besides feeling guilty that you possibly caused your child to have MS, you may have no idea how to explain to them what it is. And this may be especially true if you have seen how other family members have had to deal with the disease.

First of all, you, as a parent, need to deal with your own feelings of guilt or anger. Whatever you are feeling, make sure you have your emotions under control before talking to your child. At least be able to express them in a way your child can understand without telegraphing your feelings onto them.

Most therapists say it's best to tell your child the truth. And you know your child and how best to do that. You will be able to help them decide when and how to tell their friends or other family members if they want to do so.

We found this app - available for iPhone users - the KidsDoc - which might be helpful in managing your child's MS. (Link opens in a new window).

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