Multiple Sclerosis (MS) was long believed to be an illness that could only affect adults. In fact, the pediatric form of this disease was not discovered until just over 10 years ago. Even now, there is a general lack of knowledge concerning the pediatric onset MS. This means that many patients must wait weeks for a diagnosis, undergoing a multitude of tests and evaluations at numerous centers in the process.
The longer it takes for a child to be diagnosed, the longer it takes them to receive treatment. We ultimately need increased education for both medical providers and parents, so that they can understand they symptoms of MS and take the best steps for the child.
A recent study led by researchers at the University of Illinois evaluated the challenges faced by families of MS children in diagnosis, treatment, and everyday life. The results from this study were published in the Journal of Child and Adolescent Trauma.
The Study
There were 21 couples in this study who had a child with MS. All of the children had been treated at Boston Children’s Hospital or Massachusetts General Hospital.
The experiences among these families were all quite similar. All expressed the distress of waiting for a diagnosis and from there, adjusting to the disease itself. While there are treatments for the condition, parents explained that it was difficult to watch their child receive the painful but necessary intramuscular injections. These, for some patients, must be given twice daily and they can leave bruises or welts. Additionally, patients must deal with the physical, cognitive, and emotional challenges that come with the disease and the side effects from their medication.
Parents expressed that it is easy to be overwhelmed when watching how the disease affects their child. These feelings are amplified in the period of diagnosis as everything is new and there are so many unknowns. Parents bring their child to hospital after hospital, seeing numerous specialists and undergoing a multitude of tests to try to figure out what is wrong. They are inundated with information and, not to mention, costs. It can be an extremely stressful time, especially when you’re going through it alone.
Support
Organizations like the National Multiple Sclerosis Society help provide pediatric MS families emotional support, funds for treatment, and social support from other MS families. When supported, most families are able to cope quite well with the condition, children are able to adapt and go back to school, and routines become normal again. Researchers in this study emphasize however that long-term support for these families is so important. It can be life-altering just to speak with other parents and families going through the same thing and services like mental health counseling can make a world of difference.
Ultimately, this study is important because researchers were able to speak directly with families. Overall, the biggest issues seemed to all revolve around late diagnosis and a lack of information even after they received the news that their child had MS.
The Reason for Late Diagnosis
It truly all comes down to a general lack of awareness about the pediatric form of MS. Just because it is rare, does not mean education about this form of the disease is any less important. It’s estimated that there are approximately 400,000 people currently living with MS in the United States. Of these individuals, just 3-10% are children.
The symptoms of children living with MS are often different from those that present in adults. The pediatric condition is more inflammatory and children also are more likely to have a greater number of MS lesions. This makes diagnosis even more complicated. Many children develop fatigue, loss of vision, memory deficits, and slowed mental processing. These symptoms can develop quite quickly and parents often attribute them to their child being clumsy, tired, or mischievous. Often the very first indicator is that the child’s grades begin to slip. Unfortunately, all of these symptoms can be easily dismissed as “normal” events in childhood. This often lengthens the time before the parent brings their child to see a specialist.
Needed Changes
The greatest change needed for the pediatric MS community is increased education. Medical providers, parents, and researchers need a greater understanding of pediatric MS in order to recognize its symptoms and provide the best care.
After diagnosis, the researchers in this latest study recommend that physicians sit down this MS families and ensure they have the information they need. Simply having time to ask questions can help families feel much more equipped to handle their child’s needs. It can help reassure them they are making the right decisions for their child.
You can read more about this study here.
