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Kids Get MS Too – Meet Their Parents: Researchers Funded by the National MS Society Talk to Parents about What It’s Like to Have a Child with MS

August 29, 2016

Summary
  • Discovering that a child has MS can present unique challenges to families, from managing injections, to communicating with school personnel about cognitive issues. Researchers interviewed 21 parents of children with MS to learn more about these challenges, and we present highlights of these interviews here.
  • The team (Dr. David Rintell – then at Massachusetts General Hospital – and colleagues) reported on this study at the 2014 Joint ACTRIMS-ECTRIMS Meeting. A journal article is being prepared, with the goal of informing healthcare providers who provide medical and psychosocial care to youngsters with MS, sharing findings with parents of recently diagnosed kids, and generating hypotheses for further research. The full report is available here.
  • Dr. Rintell was funded by a pilot research award from the National MS Society.
 
Background: Kids get MS too. Some 8,000–10,000 youngsters in the U.S. have MS, and another 10,000–15,000 experience what may be MS symptoms. In 2006, the National MS Society established a nationwide network of Pediatric MS Centers to provide comprehensive evaluation and care to children and teens (up to age 18) with MS and related disorders. Today, the network has evolved to include twelve clinical centers along with a data coordinating center  engaged in research to better understand the cause(s) of MS, the characteristics of these disorders in children and adolescents, and how best to treat them.
 
Being the parent of a child or adolescent with MS can be very challenging. Research on parents of children with other chronic illnesses indicates that parents experience high levels of stress, and that this stress can affect relationships throughout the family, as well as the ability to manage the disease. Few studies have addressed the specific experiences of parents whose children have MS.
 
The Study: This team interviewed 21 parents of children with MS to learn more about their experiences pre-diagnosis, receiving the MS diagnosis, adapting to life with MS, treatment, family life, school, living with MS over time, and advice to other parents.
 
Here are some highlights from these interviews, along with quotes in bold from the participating parents:
  • “She used to sleep a lot, and I used to think it was just the lazy teenager. You look back and think, ‘shame on me.’ ”
    One of the most stressful aspects of having a child with MS is what the authors described as “the diagnostic odyssey” – the days, weeks, or sometimes months of uncertainty and anxiety before a diagnosis is made. The first symptoms experienced by children, even in this small group, varied widely from numbness to cognitive dysfunction. Most parents knew little about MS, and did not realize that children could get the disease. Some parents misconstrued symptoms and experienced significant guilt later on because they originally thought children were just being “lazy.”

    Shortening this odyssey would be one of the best ways to enhance the well-being of families affected by pediatric MS, say the authors. They noted the importance of educating pediatricians, ophthalmologists, emergency room physicians, and others on the diagnostic frontlines about early symptoms that may signal the onset of MS in kids.
 
  • “Being discharged and not having a follow up for six weeks…like most people with internet access, all you do is just read and think worst case scenario… for the next few weeks anything that happened I was like, ‘Oh my God, she’s having a relapse.’ ”
    Parents were generally impressed with the helpfulness of healthcare providers during the diagnostic process, but sometimes were disappointed in how information was relayed, or withheld. For example, one medical staff member relayed the need for a hospital stay to the child, when the mother had planned to do it herself more thoughtfully. After diagnosis, next steps were not always clear, and parents were sometimes left to figure it out for themselves.

    The authors stressed the value of a multidisciplinary approach to help families process the diagnosis of a child with MS, including professionals with expertise in mental health, psychology and patient advocacy. The National MS Society provides resources that can help, including Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS, and the MS International Federation provides Childhood MS: A Guide for Parents.
 
  • "When I notice things are off, I'm like, 'Are you all right, are you all right?' He says, 'Oh, my God, would you stop asking?' Because I know him. I look at him, I say, 'Because I know you, you wait three weeks and then you go, 'Oh, by the way…'"
Learning how to communicate effectively is a parenting challenge, especially for those who have teenagers with MS. Some parents reported becoming more vigilant, and as a result, overbearing, because of their worry that kids would not tell them about symptoms. Others encouraged children to become more independent, concerned that these kids were hesitating to live life to the fullest because of a preoccupation with being sick. All parents interviewed gave children at least some voice in decision-making related to MS.
 
The authors advise working with mental health professionals who have special expertise in adolescent development, so that families and providers can respond to the special needs of teens with chronic disease. Learn how to help a teen with MS to thrive
 
  • “The first time I did it I thought I was going to throw up, because it was just the sensation of sticking a needle in my child…”
Easily, the biggest challenge reported by these parents relating to treatment was the difficulty of injections. Partly because of the process itself – children’s fear of needles, pain at the injection site, or flu-like symptoms. And partly because of the parents’ distress at observing, or causing, their children’s discomfort. Sometimes, the children were calmer, with one mother reporting that her child said, “You’re not getting the shot. I’m getting the shot. Could you just suck it up and give me the shot?”
 
Many adults have problems with injections as well, point out the authors, noting the success of a cognitive behavioral intervention developed for people with MS. They suggest adapting this intervention for kids. Oral medications are increasingly being considered an option as well, with several studies ongoing to determine the safety of these agents specifically in the pediatric population.
 
  • “I think his illness threw them for a total loop because physically you look at him and you think nothing’s wrong with him. So I think when the teachers get him in a classroom, they’re like, what is this mother talking about?”
Communication with school personnel was a substantial, ongoing task for parents. MS can affect the school experience in a multitude of ways – fatigue can make it hard for kids to get work done on time; processing speed deficits can keep kids from picking up new information; kids can miss class time due to treatment issues. One parent talked about needing to educate teachers that her child needed to be allowed to go to the bathroom immediately upon asking, because of MS-related bladder problems. Even when accommodations are mandated (e.g., through individualized education plans) parents needed to ensure the accommodations were in fact provided.
 
The National MS Society provides several tools to help kids with MS thrive in school: a handbook for school personnel (one parent makes copies of this for teachers every year!); a guide for parents on school-related issues; and a handout to let students with MS know their own rights.
 
  • “Like anything else, it’s what you make of it. Just one day at a time. Don’t try to over-think it; don’t try to think too far ahead. The ‘what ifs,’ they're there, but don’t concentrate on them too much because – the ‘what ifs’ are not going to do it for you…And support is a big thing. Support’s very big.”
When asked what advice they would give to kids and parents experiencing a new diagnosis of MS, the responses showed how these families experienced a mix of difficulty and resilience. Key points of advice were:
  • Understand that it’s most difficult at the beginning, when your child is adjusting to having a chronic illness.
  • Take it day-by-day – worrying about the future is not productive.
  • Manage your emotions – your children will do better if they see that you are handling MS.
  • Communicate closely with healthcare providers, and include children in that process as much as is appropriate.
  • Participate in the pediatric MS community.
  • Maintain hope – these parents have been able to do so through a variety of sources: faith, watching their children adapt, education about MS, learning about current research.
 
The National MS Society provides several opportunities for people affected by MS to connect with communities: peer connectionslocal support groups; and an online community with groups for parents, teens,  and entire families affected by MS.
 
Next Steps:  The team is planning to publish these findings in full, with the goal of informing healthcare providers who provide medical and psychosocial care to children with MS, sharing findings with parents of recently diagnosed kids, and generating hypotheses for further research.
 
Learn more about support for families affected by pediatric MS

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

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