How Pediatric MS Affects the Whole Family
Although pediatric MS is rare, more kids are being diagnosed than ever before. This may be due to a variety of factors, including better diagnostic tools and an increased awareness of the condition. In previous decades, MS was thought to be a condition that only affected adults. Now that our understanding of pediatric MS is growing, more doctors are recognizing it in kids. While more children are receiving a diagnosis of MS, it can still take a long time and many medical appointments to get answers. Even after diagnosis, managing the condition can be challenging. It can take a toll on both the kids with the condition, and the rest of their family, too.
What research do we have?
Expert social work researcher Theodore P. Cross designed a research study to understand the effects of pediatric MS on the whole family, including how parents are affected. Cross is a part of the Children and Family Research Center at the University of Illinois at Urbana-Champaign. He enlisted the help of colleagues at Boston Children’s Hospital and Massachusetts General Hospital to interview 21 couples who had a child with a confirmed case of pediatric MS. The results from these interviews were published in the Journal of Child and Adolescent Trauma. The responses shed some light on how pediatric MS can impact the whole family.
Initial misunderstanding of symptoms
Most parents said they had no idea that the things they were noticing in their child had anything to do with a bigger, more serious issue. Most thought that their child was sleeping in a wrong position or was going through a period of laziness. Especially if their grades were dropping in school, or if they were becoming more clumsy or tired. Once parents realized that their children were developing more than just a period of fatigue or a behavioral issue, anxiety set in pretty quickly.
Journey to diagnosis
As mentioned, the path to diagnosis can take a long time, and can be overwhelming for kids and parents. This time of uncertainty brought with it significant stress and anxiety for parents, that continued well beyond diagnosis. The sheer number of doctors seen, visits to different healthcare facilities, and diagnostic procedures contributed to this distress. Additionally, the parents interviewed said they felt overwhelmed by the tons of information, paperwork, and future treatment costs related to this process. While receiving a diagnosis may be helpful, the process to this point and the fear of what might come next can be incredibly life-impacting.
Stress related to MS management
Even past the diagnostic process, parents reported significant stress and fear, both for their child’s future and well-being. Further, many of the interviewed parents were understandably distressed watching their kids received painful injections every day to manage their MS. The bruises and welts left behind from treatment were similarly bothersome for parents. Also, watching their child battle treatment side effects and not knowing long-term effects provided another source of frustration for parents.
Learning to set realistic expectations
Parents also reported struggling to cope with the emotional, cognitive, and physical aspects of the disease at home and at school. Learning to set realistic expectations while helping their child maintain their independence was a significant source of tension and distress. These heartfelt and honest responses from parents show that the effects of pediatric MS can invade all aspects of daily life.
Positive outcomes and finding support
Even though distress, anxiety, and fear were common themes in the interviews, there were some positives shared by the parents. Some parents reported that they received emotional or financial support from the National Multiple Sclerosis Society. Many said they found comfort and strength in communities formed between other families affected by pediatric MS and with their doctors. Another positive outcome shared by many of the parents was that their child was doing well on disease-modifying therapies (DMTs) and that they were adapting well to school. This was especially true for those who sought out extra social support.
Long-term emotional support is crucial
After hearing this, the researchers suggested that long-term emotional support for families with pediatric MS will be crucial to overall wellbeing and coping with overwhelming feelings moving forward.1,2
Do you have a child with pediatric MS? If so, how has it impacted your family and where do you go to find support?
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?