Emotional, Social, and Cognitive Challenges in Pediatric MS


Experts in multiple sclerosis discuss the importance of a multidisciplinary approach for pediatric patients and emphasize the role of social workers, psychologists, and support groups for patients and families.  

Lauren B. Krupp, MD: The ideal setting in taking care of a child who has MS [multiple sclerosis] is to provide support that’s multidisciplinary. Not everyone can do this, however, it is very important to have nursing involved. It gives the parents reassurance, which they really need. There is kindness and time and ability to answer all the questions that the neurologist will do their best to provide. But sometimes the needs are beyond what the time allotment is for the doctor. The nursing staff, with experience on the disease-modifying therapies and the details of going for tests, can provide tremendous support. Additionally, we see a lot of challenges in the psychosocial sphere. It’s important to recognize that the teenage years are particularly challenging for everyone; kids are trying to differentiate from their parents and become independent. To have to go with their parents to see the doctor or go for the testing can be very stressful for them. They want to be with their friends; they don’t want to be different. Social work or psychologists who can reach out to the families and try to help them cope constructively with the stresses that dealing with a chronic illness can bring can be very useful.

We also think it’s important to have access to neuropsychology; it’s not uncommon in caring for young people to run into individuals who may have a prior learning impairment or learning disability. When a child such as that acquires an inflammatory, demyelinating disease such as MS, the combination can be particularly troublesome. There is also a subgroup of kids with MS who do have either problems with dexterity and handwriting that may interfere with their classwork, or who have some cognitive slowing and might need some extra time on examinations and need assistance. This would be called a 504 plan, or in more pronounced instances an IEP, or individualized educational program. A neuropsychologist can help in the identification of where the weaknesses and strengths are, so that cognitive rehabilitation if needed can be initiated early. Some children are going to need occupational and physical therapy if they’ve had a relapse that’s left problems with walking, strength, dexterity, or hand use. Access to that expertise is also critically important.

Tanuja Chitnis, MD: In pediatric patients, cognitive impairment can be quite frequent. Different studies have shown that somewhere in the range of roughly one-third of pediatric MS patients might have 2 major areas of cognitive deficits; the other two-thirds might have 1 area they’re having trouble with. This can impact not only their everyday life, but also school, eventual job goals, or maybe college. It’s very important to address these cognitive issues as early as possible. I tend to do this through neuropsychological testing, which I have available in the clinic; this can help to implement an IEP, or individualized education plan, for any young person with MS. In terms of depression, it does vary; it ranges anywhere from 10% to 40% in different studies of patients with pediatric MS. It’s an important factor to consider, and we should always screen for depression, ask the question, and make sure that depression is managed and treated as well as possible.

Lauren B. Krupp, MD: Fatigue is a big problem in MS; it’s certainly the most common symptom in adults with MS. With kids, it is a little more complicated. The parents seem to pick up on the fatigue in some situations more than the kids do. Some of this is what you see among healthy teenagers who want to stay up late at night and have a lot of trouble getting up early in the morning. The fatigue may be beyond that, however. It can be worsened if there’s a lot of emotional distress. Fatigue in my view is best managed nonpharmacologically. I think children today with MS, and even those without MS, have to be encouraged to exercise, to be physically active, to participate in team sports when team sports become available again, and not just be passive and sitting on the couch playing video games. The importance of exercise can’t be emphasized too much; exercise can actually help fatigue. The other thing that sometimes works for kids who have a lot of trouble in the morning getting up is to review good sleep hygiene. This means that at bedtime, all lights go out. No staying up on the computer or iPhone. Going over these simple kinds of techniques can help fatigue, which is otherwise at times quite challenging.

Tanuja Chitnis, MD: In terms of support groups for pediatric MS, there are different support groups in various states. It’s best to check in with the National Multiple Sclerosis Society for a support group in your area. There have been in the past a number of camps that have been run for patients with pediatric MS, and they’ve been wonderful. We will see how this translates in the virtual world; maybe they’ll be reinstated in the next few years. In addition, there are support groups for parents; that’s a very important factor to remember and consider. Parents need support to help get their young person through this disease and treatment.

Transcript Edited for Clarity

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