Caregiver's Guide to Pediatric Multiple Sclerosis (MS)

Multiple sclerosis (MS) is an autoimmune disease that affects the brain and spinal cord. It causes damage to the protective coating around nerves, known as myelin. It can also damage the nerves themselves.

In most cases, MS is diagnosed in young adults. But it can also affect children. A recent review found that at least 5 percent of people with MS are children.

If you care for a child with MS, there are many steps you can take to help them enjoy optimal health. In this caregiver's guide, you can explore some strategies for managing the condition.

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MS symptoms can change from day to day, week to week, or month to month. Many people go through periods of remission, when they have relatively few symptoms. Remission can be followed by periods of relapse or 'flares,' when their symptoms get worse.

Tracking your child's symptoms can help you learn if there are triggers that make their symptoms worse. For example, your child might develop symptoms during hot weather. Certain activities might also have an effect. When you know how different factors affect them, you can take steps to help minimize your child's symptoms.

Keeping a journal to track symptoms can also help you and your child's healthcare team understand how the condition is progressing. Over time, this might help with identifying effective treatment strategies.

Here are some tips to help you start a symptom journal:

Use a medium that's convenient for you

If you have a smartphone or tablet, you might find it convenient to use a symptom-tracking app that's been designed for people with MS. If you prefer, you can log your child's symptoms in a document or spreadsheet on your computer or a handwritten journal.

Learn about the symptoms of MS

Knowing what to watch out for can help you track your child's symptoms more effectively. For example, they might experience fatigue, vision changes, stiff or weak muscles, numbness or tingling in their limbs, trouble concentrating or remembering things, or other symptoms.

Talk to your child about how they're feeling

You can learn a lot about your child's condition based on how they act, but they're the best authority on how they feel.Encourage them to talk with you about how they're feeling each day and help you keep their symptom journal up to date.

Log any changes in their symptoms

If your child develops changes in their symptoms, take note of what those changes involve. For example, when did their symptoms start and end? How severe are their symptoms? How are they affecting your child?

Take note of what was happening when their symptoms changed

To identify potential triggers, it may help to log the weather, your child's sleep habits, and their recent activities. If their symptoms change after they take a medication or a tweak to their treatment plan, that's also important to note.

Watch out for patterns

Over time, you might notice that your child develops symptoms during certain weather conditions or after certain activities. You might notice that some types or doses of medication seem to work better than others.

Keep this in mind

Learning about your child's symptoms and potential triggers may help you and their healthcare providers understand and treat their condition more effectively. Try to remember to bring your child's symptom journal to each appointment with their doctor.

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Disease-modifying therapies (DMTs) are the main type of medication used to treat MS. A DMT may help slow the progression of your child's condition. It may also help prevent periods of relapse, when their symptoms get worse.

Your child's doctor might prescribe other medications to help manage their symptoms, too. For example, they might prescribe:

• corticosteroids to treat acute flares
• muscle relaxants to relieve muscle stiffness or spasms
• medications to help relieve pain, fatigue, bladder problems, bowel problems, or other symptoms

Here are eight things to keep in mind as you work with your child's healthcare providers to develop a treatment plan:

Most DMTs have not been approved for use in children

So far, the U.S. Food and Drug Administration (FDA) hasn't approved any DMTs for use in children under the age of 10. The FDA has only approved one DMT — fingolimod (Gilenya) — for use in children who are 10 years of age or older.

Many DMTs are prescribed 'off-label' to children

If the FDA hasn't approved a DMT for use in children, your doctor might still prescribe it. This is known as off-label medication use.

The FDA regulates the testing and approval of drugs, but not how doctors use drugs to treat their patients. So, your doctor can prescribe a drug however they think is best for your child's care. Learn more about off-label prescription drug use.

Your child might need to try more than one DMT

The first type of DMT that your child's doctor prescribes might not work well or might cause unmanageable side effects. If that happens, their doctor may prescribe a different DMT.

Medications can cause side effects

Before you add a new medication to your child's treatment plan, ask their doctor about the potential risk of side effects. If you think your child has developed side effects from a medication, contact their doctor right away.

Some medications interact with one another

Before you give your child a medication or supplement, ask their doctor or pharmacist if it can interact with any other medications or supplements that they take. In some cases, their doctor might make changes to their treatment plan to avoid drug interactions.

Some medications are more expensive than others

Depending on your health insurance coverage, some medications may be easier for you to afford than others. Contact your insurance provider to learn if a medication is covered.

Physical therapy might help

In addition to prescribing medications, your child's doctor might refer them to a physical or occupational therapist. These specialists can teach you and your child how to perform stretching and strengthening exercises and adjust their day-to-day habits and environments to meet their needs.

Daily habits make a difference

Your child's doctor might recommend changes to their lifestyle. For example, it's important for your child to:

• get enough rest
• exercise regularly
• eat a nutritious diet
• make time for play
• enjoy relaxing activities and avoid stress
• limit exposure to hot temperatures, which can cause symptoms to flare

Keep this in mind

Over time, your child's condition and overall health might change. Their prescribed treatment plan might change, too. Their doctor can help you understand the potential benefits and risks of different treatment options, while answering questions that you might have.

Children can lead full and satisfying lives with MS. But there are challenges that come with managing a chronic health condition. To help you and your child cope with the challenges of MS, it's important to reach out for support.

Here are eight strategies that can help you feel less alone.

Find a healthcare provider that specializes in pediatric MS

Depending on where you live, you might be able to visit a healthcare center or provider that focuses on children with MS. The National Multiple Sclerosis Society maintains a list of providers on its website.

Connect with a patient organization

Reaching out to other families who have a child with MS can help you feel less alone. It can also help your child meet other children who share some of the same experiences with MS.

Patient organizations are a great place to start connecting with others. For example, the Multiple Sclerosis Association of America, National Multiple Sclerosis Society, and Pediatric Multiple Sclerosis Alliance offer information and support to families living with MS.

Oscar the MS Monkey is another non-profit organization that runs outreach programs and activities for children with this condition.

Join a support group

The National Multiple Sclerosis Society hosts a variety of online support groups and discussion boards and connects people to local support groups in many areas. The Multiple Sclerosis Association of America also operates an online support community.

Call a peer hotline

The National Multiple Sclerosis Society also operates a confidential hotline for people coping with MS. You can call 1-866-673-7436 to speak with a trained volunteer, 7 days a week from 9 a.m. to 12 a.m. Eastern Standard Time.

Find others through social media

Many families connect through Facebook, Twitter, Instagram, and other social media platforms. To find other caregivers of children with MS, consider searching social media platforms using hash tags such as #kidsgetMStoo or #PediatricMS.

Explore caregiving resources

The Caregiving Action Network offers tips and support to caregivers of children with special needs and other people with chronic health conditions. These resources aren't specific to MS, but they may help you understand and manage your own needs as a caregiver.

Make an appointment with a counselor

Managing a chronic condition can be stressful, and in turn, that stress can impact mental health. If you or your child is struggling with chronic stress, anxiety, or depression, there are treatments that can help. Consider asking your doctor for a referral to a mental health specialist who can provide group, family, or one-on-one counseling.

Ask your friends and family members for help

It may help to talk with loved ones about the challenges you're facing, enjoy some quality time with them, or ask them for help with caregiving tasks. For example, they might be able to babysit or take your child to a medical appointment.

Keep this in mind

Taking care of a child with a chronic health condition can be difficult at times. Reaching out for support may help you manage your caregiving responsibilities and cope with any challenging feelings you may be having. There's no shame in asking for help — and getting the support you need may improve life for you and your child.

A healthy lifestyle can help children lower their risk of illness and injury, while supporting their mental and physical well-being. If your child has MS, healthy habits are an important part of managing their condition. As a caregiver, you can help them develop those habits starting from a young age.

To help your child enjoy the healthiest life possible, consider following these 10 tips.

Help your child eat a nutrient-rich diet

Plan meals with a wide variety of fruits and vegetables, beans and other legumes, nuts and seeds, whole grains, and lean protein sources to help your child get the nutrients they need to thrive. If you don't feel confident in your ability to prepare healthy snacks and meals, consider making an appointment with a dietitian. Your child's healthcare team can provide a referral.

Encourage your child to get moving

Regular exercise and physical play helps your child maintain their muscle strength and overall health. Your child's doctor or physical therapist can develop an exercise or activity plan that's safe and suited to their physical needs.

Consider signing your child up for swimming lessons

The buoyancy force of water can help support your child's limbs, while the resistance that water provides strengthens their muscles. Exercising in water may also help your child stay cool and avoid overheating, which is a concern with MS.

Borrow or buy books and puzzles to stimulate your child's mind

MS can potentially affect your child's memory and thinking. Books, puzzles, word games, and other mentally-stimulating activities might help them practice and strengthen their cognitive skills.

Cut down on distractions while your child is working

When your child is doing homework or other mentally challenging tasks, turn off the TV and try to minimize other distractions. This may help them concentrate, while coping with the potential cognitive effects of MS.

Help your child recognize and respect their limits

For example, help your child learn what fatigue feels like and encourage them to rest when they get tired. It's also important for them to ask for help when they need it.

Talk to your child's school about their health needs

Consider making an appointment with their teacher and school officials to discuss their condition and request special accommodations if needed. In the United States, and many other countries, schools are legally required to accommodate a child's medical condition.

Pay attention to your child's mood

It's normal for children to feel down sometimes. But if your child has been feeling sad, anxious, irritable, or angry on a regular or ongoing basis, talk to their doctor and consider asking for a referral to a mental health specialist.

Invite your child to share their feelings and questions with you

By listening to your child and giving them a shoulder to cry on when needed, you can help them feel safe and supported. If your child asks questions about their condition, try to answer honestly, in terms they can understand.

Help your child learn how to manage their condition

As your child gets older, it's important for them to learn about their condition and gradually take on more responsibility for managing it. It might seem easier to do things for them now, but they'll benefit from being involved in aspects of condition management, such as symptom tracking and meal planning.

Keep this in mind

To help your child stay healthy and prepare for life with MS, it's important to promote healthy habits and self-management skills from a young age. Your doctor and other healthcare providers can help you and your child learn how to accommodate their health needs while they take part in a wide variety of activities.

As a caregiver, you play a vital role in helping your child lead a full and satisfying life. Your child's healthcare providers can help you learn how to manage their condition and treatment plan. Patient organizations, support groups, and other resources can also help you develop strategies for keeping your child safe and healthy.

It can be a balancing act to manage the challenges of caregiving while also attending to your own health needs. That's why it's so important to reach out for resources and help. By building your support network, you can help meet your child's needs and your own.