Coping With the Invisible Symptoms of Pediatric Multiple Sclerosis

Help your child overcome cognitive changes, fatigue, and more

Helping Your Child Cope With MS
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Your child's brain, while fascinatingly flexible and beautiful in its development, is also vulnerable to its environment. So when a disease like multiple sclerosis strikes at a young age, key areas of development like thinking, memory, and language skills are commonly affected.

Aside from cognitive development, childhood and teenage years are a prime time for social and emotional development. This is a time when a child is coming into her own, exploring their identity, and embracing friendships. But extreme grief or anger over a diagnosis of MS, coupled with depression as a primary symptom of MS (meaning from MS-related changes in the brain), can be overwhelming for a child.

Childhood and adolescence is also a time of peer and academic pressures, and being diagnosed with MS often places an extra weight on a child's shoulders. Just imagine trying to study for three tests when you are fatigued or trying to focus on a school assignment when your memory is fuzzy and the classroom noise feels like a bee buzzing in your ear.

These "invisible" symptoms of MS, because they are not usually physically apparent, may not only be difficult for a child to accept and manage but also difficult for others to acknowledge.

Let's address specific steps you as a parent can take to better understand and deal with these symptoms—that while less visible to others, may be the most disabling for your child.

Cognitive Problems

According to one study, over one-third of children with MS have cognitive impairment, defined as scoring at least one and a half standard deviations below their peers on at least two cognitive tasks. The most common cognitive troubles seen in children with MS include problems with

  • attention (for example, performing complex tasks like math equations or completing an exam).
  • memory (for example, remembering where homework or a bookbag was placed).
  • naming and recognition (for example, feeling like the word you want to say for an object is on the tip of your tongue).
  • processing information (for example, learning new material in the classroom).

While children may be more susceptible to changes in cognition than adults, the upside is that compared to adults, experts speculate that children may be able to better compensate for their cognitive problems.

Common tools used for children with MS-related cognitive problems include

  • using memory aids like a daily planner, reminder lists, a phone with downloaded memory aid apps, post-it notes, mnemonics, or alarms on a watch.
  • brain exercises, like crossword puzzles and word games, can help hone cognitive skills.
  • being organized and decluttering at home and at school.
  • humor and learning how to relax (for example, deep breathing and meditation) during frustrating moments.

Since many cognitive changes can be subtle or influenced by other factors like stress, pain, or depression, it's best for a child with MS to undergo a neuropsychological evaluation, especially if concerns are arising in school or at home.

In the end, knowing exactly what your child is struggling with is ideal for moving forward with a plan. Along with a child and his or her parents, the child's teacher, psychologist, and principal can make accommodations or modifications that fit your child's needs.

Mood Changes

It's perfectly normal for children (like adults) to feel sad or anxious at times. But when that sadness or anxiety is persistent, long-lasting, and begins to affect their overall daily functioning, a mental health condition (like depression) that requires professional guidance may be present.

Besides sadness or excessive worry, other signs to watch out for in your child include:

  • a change in appetite: Is your child eating less and/or losing weight?
  • sleep difficulties: Is your child having a difficult time falling asleep or staying asleep?
  • behavior problems: Is your child more irritable or acting out at home or school?
  • loss of interest: Is your child not excited by or engaged in the activities she once enjoyed?

While no parents like to see their child suffering emotionally (or physically), be at ease knowing there are therapies to help your child get better. These therapies include:

The bottom line here is that if you notice a change in your child's mood or behavior, it's important to seek advice from your child's doctor. A referral to a therapist, psychologist, or psychiatrist may be recommended.

Fatigue

About 30 percent of children with MS experience debilitating fatigue, often described as a combination of "whole-body exhaustion plus brain fog" that is severe and may occur in the morning even after a refreshing night's sleep.

The challenge with managing fatigue in pediatric MS is that it often stems from more than one cause.

For one, the disease MS itself causes fatigue, and this is probably the hardest culprit to treat. While experts have not precisely determined why people with MS experience this, just imagine how hard your nerves must work to move, feel, and think while nerve pathways are damaged or blocked off.

Fortunately, other sources of fatigue in MS are easier to treat (if not curable), which is why it's important to have your child's fatigue carefully evaluated by both your child's neurologist and pediatrician. Some of these causes include:

  • Medications: Interferon therapy may cause fatigue and a "flu-like" illness, and drugs used to treat bladder problems or muscle spasms may cause tiredness.
  • Sleep problems: Poor sleep habits, insomnia related to depression and/or anxiety, or a sleep condition like restless leg syndrome may contribute to fatigue.
  • Other medical conditions: Thyroid disease, iron deficiency anemia, viral infection, and depression are examples of non-MS health conditions that cause fatigue.

Once you, your child, and your healthcare team have sorted out and treated other causes, to help your child best manage his or her MS-related fatigue it's a good idea to see rehabilitation specialists, like a physical therapist and occupational therapist.

A physical therapist can access your child's muscle balance, weakness, and stiffness and address mobility issues (if necessary). With those in mind, the therapist can devise an exercise program that can improve your child's fatigue while being safe and keeping unique limits in mind. If exercise is not in your child's interest or ability, yoga is a great and effective alternative.

An occupational therapist can help a child compensate for and/or cope with everyday difficulties related to MS. More specifically, an occupational therapist can teach your child energy conservation strategies. For instance, let's say your teenager loves volleyball but finds she is too fatigued when she gets to practice to enjoy it or even participate sometimes. In this case, your therapist may recommend getting rides to school (instead of walking) and taking an afternoon nap on those days of volleyball practice.

A Word From Verywell

In the end, with acknowledgment, support, open and honest communication, and resiliency (a "bit of grit"), you and your child can navigate these years well. Understanding the basics of the disease and partnering with your healthcare team go a long way, too.

The silver lining, too, is that your child may go into adulthood with a deeper sense of what's important in life and self-assurance that they can overcome hardship and be OK.

View Article Sources
  • Goretti B et al. Fatigue and its relationships with cognitive functioning and depression in paediatric multiple sclerosis. Mult Scler. 2012 Mar;18(3):329-34. DOI: 10.1177/1352458511420846
  • MS International Federation. (n.d.). Childhood MS: a guide for parents.
  • National MS Society. (2017). Kids Get MS Too: A Guide For Parents With A Child Or Teen With MS.
  • Suppiej A, Cainelli E. Cognitive dysfunction in pediatric multiple sclerosis. Neuropsychiatr Dis Treat. 2014;10:1385-92. DOI: 10.2147/NDT.S48495