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Working with children and adolescents with MS in the US

Maria Milazzo
Nurse Practitioner, National Pediatric MS Center, New York, USA

Way Ahead 2007;11(1):8-10

The woods were filled with encouraging voices as 14-year old Brendan reached the top of the ladder and stepped out onto the log, suspended 32 feet in the air. He cautiously moved forward as his new friends hooted with excitement. As the high ropes instructor yelled up to him to put his arms out for balance as he crossed the log, Brendan interrupted, "I have MS…balance is a challenge for me!!" The rest of the group laughed knowingly. A group of 20 teens with MS had come together in the woods of Rhode Island, USA for the National Pediatric MS Center's Teen Retreat Weekend. Kids were drawn from across the US and Canada for a unique programme of team building and networking designed to develop a community for teens with MS.

Boy canoeing at the Teen Retreat Weekend

Multiple sclerosis is typically thought of as a disease that affects young adults. However, between 3.5- 5% of patients are diagnosed prior to age 18, with an estimated 100,000-200,000 youngsters affected worldwide. Onset before puberty is reported with an incidence of 0.2-0.7% of cases[1-3]. Gender distribution in childhood onset MS is approximately equal in children less than 10 years of age. The gender distribution changes around the age of puberty to a female predominance that is stronger than that seen in the adult population[1,4,5].

Diagnosis

The definition of paediatric MS has not been universally established. The McDonald criteria[6] is often used, with recurrent episodes of neurologic dysfunction involving separate areas of the central nervous system, lasting at least 24 hours, with the removal of the lower age limit. Children present with symptoms similar to those seen in adults, which include optic neuritis, cerebellar, brainstem, pyramidal, sensory and less commonly, cerebral and bladder/bowel signs. Cognitive manifestations may affect up to one-third of affected children. Memory, attention and academic functioning are commonly affected[7,8]. Children may not complain about symptoms, either because they are not too bothersome - a child with unilateral optic neuritis still sees from their other eye, and lifestyle is not greatly impacted unless it is baseball season for example, or because they think that the symptom will get better (often reporting the second or third episode of a particular symptom). If the child does tell his or her parent, the parent may think that the problem is transient, "I thought his arm was numb because he slept funny". There may be a delay in getting an appointment with the health care provider, during which time the symptom resolves. The paediatrician may not be aware of paediatric MS and time may be lost in exploring other causes for the complaint. Child neurologists may not feel comfortable with making the diagnosis of what is commonly an 'adult' condition, and refer to an adult neurologist or MS specialist. The causes for demyelination in children and adults may differ and the work-up for a child with symptoms may need to include both.

Boy and two girls at the Teen Retreat Weekend

Treatment

Once the diagnosis is made, treatment decisions again become difficult, as the adult neurologist is not familiar or comfortable with treating children and the child neurologist may be unfamiliar or uncomfortable treating MS. A referral to a centre that specialises in the treatment of paediatric MS is important. The diagnosis is confirmed and a treatment plan established. A collaborative relationship between centre and local physician is developed to provide for ongoing care for the child and family.

While none of the disease modifying therapies (DMTs) is approved by the FDA for use in paediatric MS, each has been successfully used in this age group. Frequent monitoring of compete blood counts and liver function tests is indicated with the interferon class of medications, especially for younger children. A slow dose titration will help reduce systemic side effects such as fever, malaise, and body aches. Glatiramer acetate can be initiated at a full dose and does not require blood monitoring[9]. For children with frequent or severe attacks, chemotherapy such as cyclophosphamide or mitoxantrone has been used successfully, usually in collaboration with paediatric oncology.

One teen shared that she wanted people to remember she is still the same person she has always been, the "MS is just a part of me", not her whole identity.

Three girls at the Teen Retreat Weekend

Caring for the child and family

When a child is diagnosed with MS, parents often report feeling 'lost'. As they disclose the diagnosis to others they often hear statements such as, "MS does not happen in kids". There are few opportunities to meet and network with others in the same situation. Establishing a relationship with other parents is helpful in coping with the diagnosis and growing as a family in the process. Since there are few opportunities to meet with other families locally, telephone conference calls and internet chat rooms are useful in connecting people through educational programs or support 'groups'. Programmes such as the Teen Weekend Retreat can bring kids together to meet, share experiences, build community, and establish a platform for continued communication via phone or computer.

MS may be similar in children and adults. However, there are techniques that may be useful when working with children. It is important to remember 'kids are kids'. One teen shared that she wanted people to remember she is still the same person she has always been, the "MS is just a part of me", not her whole identity. The goal of the health care team can be directed at normalising the child's life, while ensuring optimal treatment, supporting the family, and working with the school to establish an educational programme that will provide any assistance necessary for a positive school experience.

For example, at this time, all DMTs are given by injection. The auto-injector devices enable the child to give their own injections, but the loud 'clicking' sound may scare some children. Some kids prefer to take their injections without the device. Relaxation techniques and modalities such as guided imagery may be used to help reduce the anxiety around injections. Giving control to the child, when possible, will increase compliance with the medications. Using charts with injection site options, allowing the child to mark where the injection is given, allowing the child to prepare the medication and apply pre-medication such as EMLA cream (a topical anaesthetic) often gives 'ownership' of the process to the child and may help with compliance. As kids get older they may want to become more autonomous in their care. The parent may monitor that medication is taken without actually being involved in the process.

The relapsing/remitting nature of MS means that an affected child/teen may have unpredictable school attendance, with missed days due not only to relapses, but also due to many scheduled medical visits and treatments. Children may drop out of activities because of sporadic attendance or for physical reasons. Educational modifications involve working closely with the child, their family, and school to determine what issues might be present over time. Very basic examples of this include the use of a school locker with a key lock rather than a combination which may be difficult to remember; a discussion with the classroom teacher that a child may need to take frequent bathroom breaks and is not trying to avoid class work by leaving for the bathroom at multiple intervals throughout the day; sensitizing classmates that a teen's symptoms may wax and wane over time, and that there may be missed days of school, and days where fatigue, balance and strength may be more of an issue than others. Decisions for higher education may be influenced by the diagnosis. Some teens choose to attend a local college, so that their medical needs can be cared for at home. Other teens change medications to those that are given less frequently, so that they can go home or to the infirmary once a week for an injection, and "not have MS while they are at school".

Whenever working with children and teens, it is important to always be honest, present the information clearly and concisely, and allow the youngster to help in the decision making process.

"I just want to be a normal teenager. I am the same person I was before so don't treat me any differently. I may need your help from time to time when my MS symptoms appear. Include me in activities, I'll let you know if I can't do something."[10]

References

  1. Ghezzi A, Deplano V, Faroni J, et al.
    Multiple sclerosis in childhood: clinical features of 149 cases.
    Mult Scler 1997; 3(1): 43-6.
  2. Boiko A, Vorobeychik G, Devonshire V, Sadovnik D; University of British Columbia MS Clinic Neurologists.
    Early onset multiple sclerosis: a longitudinal study.
    Neurology 2002; 59(7): 1006-10.
  3. Simone IL, Carrara D, Tortorella C, et al.
    Course and prognosis in earlyonset MS: comparison with adult-onset forms.
    Neurology 2002; 59(12): 1922-8.
  4. Baum HM, Rothschild BB.
    The incidence and prevalence of reported multiple sclerosis.
    Ann Neurol 1981; 10(5): 420-8.
  5. Duquette P, Murray TJ, Pleines J, et al.
    Multiple sclerosis in childhood: clinical profile in 125 patients.
    J Pediatr 1987; 111(3): 359-63.
  6. McDonald WI, Compston A, Edan G, et al.
    Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the diagnosis of multiple sclerosis.
    Ann Neurol 2001; 50(1): 121-7.
  7. MacAllister WS, Belman AL, Milazzo M, et al.
    Cognitive functioning in children and adolescents with multiple sclerosis.
    Neurology 2005; 64(8): 1422-5.
  8. Banwell BL, Anderson PE.
    The cognitive burden of multiple sclerosis in children.
    Neurology 2005; 64(5): 891-4.
  9. Krupp L, MacAllister WS.
    Treatment of pediatric multiple sclerosis.
    Curr Treat Options Neurol 2005; 7(3): 191-9.
  10. Mackey E.
    Dear friend, I have MS. A booklet for friends of teens with multiple sclerosis.
    In press 2006.

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