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Pediatric MS: The Challenges of Identifying and Treating MS in the Very Young

By: Jennifer Boyd, RN, MHSc, MSCN

How common is pediatric MS?

About 5 percent of people living with MS are diagnosed before 18 years of age and are considered to have pediatric, or childhood onset, MS. Although very rare, children as young as two years old have developed this disease. In the US, it is estimated that 8,000 to 10,000 children and adolescents have MS and many more have experienced symptoms that may lead to a future diagnosis of MS. In fact, many adults with MS report having MS symptoms as a child or teen. This raises the possibility that the diagnosis of MS in children is often delayed until adulthood. More timely diagnosis may lead to an apparent increase in pediatric MS.

Is diagnosing MS in children difficult?

Diagnosing children with MS can be more challenging than with adults. Although MS symptoms are generally the same in children and adults, children are more likely to be very unwell at first presentation, with decreased level of consciousness, seizures, and fever. There are many other neurological diseases seen in childhood with similar symptoms that must be considered. Also, young children may not be able to adequately describe sensory symptoms such as numbness or tingling, or they may not mention that they have decreased vision in one eye. These symptoms may come and go without a child receiving medical attention. While the awareness of pediatric MS has grown exponentially over the past 10 years, there are some pediatricians and neurologists who may not consider MS as a potential diagnosis, particularly in young children. Without regular follow-up and attention to the presence of recurrent MS symptoms, children could go for a number of years without a diagnosis or treatment.

Is the disease course different in children?

The majority of children and teens begin with a relapsing-remitting course. Primary-progressive MS is extremely rare in the pediatric population. MS appears to progress more slowly in children than in adults. The reason for this is unknown but some believe that a child’s developing brain and immature immune system may protect them from rapid disease progression. The influence of early treatment on reducing the progression rate even further remains to be seen.

How are children treated for MS?

Just like adults with MS, children and adolescents are usually offered treatment with one of the disease-modifying therapies. Because current consensus supports initiation of treatment early in the disease course and these therapies can reduce the frequency and severity of relapses, decrease the number of new lesions seen on MRI, and slow disease progression, they are considered for all age groups. Depending on the age and weight of the child, some neurologists may start treatment at a lower dose and remain at a lower dose for a longer period of time than with adults. Recent studies indicate that the disease-modifying therapies are safe and well tolerated in children and teens.

What challenges do children with MS face?

Kids with MS often miss school because of relapses, hospitalizations, and doctors’ appointments. Ongoing symptoms such as fatigue, depression, and cognitive problems (memory and concentration difficulties) can affect not only school performance but also relationships with others and participation in social activities. They may experience self-image issues because of physical symptoms or negative responses from others regarding their MS diagnosis.

While not all children with MS experience these issues, they need to be recognized and addressed. Treatment to reduce the number and severity of relapses can help minimize school absenteeism. Dealing with symptoms like fatigue or depression is necessary. Those who experience school performance issues or report memory and concentration difficulties should receive neuropsychological testing to help identify particular problem areas. Neuropsychologists can provide strategies for overcoming or adapting to cognitive deficits. It is important to work with the child’s school to ensure all physical, cognitive, and social needs are met. Young people who are having difficulty adjusting to their diagnosis and any physical, cognitive, or social changes may benefit from professional counseling.

What research is being done in pediatric MS?

Pediatric MS research is taking place worldwide. The current focus is on understanding possible genetic and environmental triggers of MS in children, identifying who is at risk for pediatric MS and ways to modify risk factors, exploring the physical and cognitive effects of pediatric MS, and discovering ways to accurately diagnose MS as early as possible. This research will help us learn how best to treat children with MS, and provide information about the disease process from its earliest stages.

How can a parent find care providers who are experts in pediatric MS?

The National MS Society has established six Pediatric MS Centers of Excellence. Each center offers comprehensive services by multidisciplinary teams of pediatric and adult MS experts. Financial assistance is available for travel, accommodations, and care so families can access these services, regardless of their ability to pay or proximity to a center. Go to www.nationalmssociety.org for more information. 

Jennifer Boyd is a Clinical Nurse Specialist in the Pediatric Multiple Sclerosis Clinic at the Hospital for Sick Children in Toronto, Canada. She is a Multiple Sclerosis Certified Nurse and is on the Board of Directors of the International Organization of MS Nurses, an advisor on the Editorial Board of MS Exchange and the pediatric MS expert for the MS Society of Canada’s MS Answers web-based client education program. She frequently presents, writes and consults on the topic of pediatric MS.

Pediatric MS Resources

Children and Teens with MS: A Network for Families offers educational and psychosocial support for families. The Network currently offers the following resources:

  • Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS
  • Mighty Special Kids - activity book for children (ages 5-12) with MS
  • Moderated listservs for parents and teens to share their questions and concerns.
  • For information or to register for the Network, call 1-866-KIDS W MS or email childhoodms@nationalMSsociety.org

MS Society of Canada has an online discussion forum with categories for kids with MS ages 8 to 12 and teens with MS ages 13 to 17. Find it at www.msdiscuss.com.

MS Kids Connection, Inc. is a nonprofit organization co-founded by Brandhi Russo, who has diagnosed with MS at the age of 13. Information on educational programs, resources, and support is available at www.mskidsconnection.com.

Children's Hope for Understanding Multiple Sclerosis is a nonprofit organization that focuses on supporting the child's need to understand the disease. For more information visit www.chumsweb.org

 (Last reviewed 7/2009)



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