CG, a 13 year-old girl with recurrent attacks of MS, was
referred to the Stony Brook MS Comprehensive Care Center for
diagnosis and treatment. She started on high-dose interferon (a
disease-modifying therapy) and tolerated the treatment well.
However, as she continued to have relapses, she was forced to
add chemotherapy with mitoxantrone to her treatment.
Through chemotherapy CG stabilized and was relapse-free for a
short period. However, a year later she started to experience
problems with memory in school.
CG then received a psychological evaluation, which identified
deficits in memory. After adjusting CG's daily routine and
teaching her special methods for improving her memory, she
remained well even after she was taken off chemotherapy.
However, following a flu-like illness, she developed a severe
relapse. CG lost the ability to walk and started to suffer from
severe fatigue. Despite two courses of intravenous steroids, she
did not improve and needed to be hospitalized.
Her case was discussed with MS experts throughout North America.
Based on these discussions, additional treatment was tried.
Finally, she began to show some recovery. She became more alert,
less fatigued, and recovered the use of her arms. At this point
CG was transferred to a rehabilitation hospital, where she
showed improvement and later returned to school and to her
CG is exceptionally brave, as are her parents. Over the past few
years, she has suffered tremendously and shown great resolve. We
hope her struggle will not be in vain.
Unfortunately, the evaluation and treatment of children with MS
is, to date, poorly studied and not well understood. Although
there are an estimated 15,000 youngsters in the United States
that have MS, there are very few specialists in this area. Most
children, therefore, either see pediatric neurologists, who may
not know much about MS, or MS specialists, who are often
uncomfortable treating children and adolescents.
To date, there have been no formal studies on approved therapies
for children with MS. Educators do not know how to adapt
programs for affected children, and there is insufficient
experience among physicians as to the frequency, prognosis, and
course of pediatric MS. Additionally, the effects of MS on the
cognitive, emotional, and social development in children and
adolescents is unexplored.
At the National Pediatric MS Center, we believe that the
experience of MS specialists treating children needs to be
accumulated and shared with the MS community. This will help us
make advancements in improving the lives of these children and
adolescents with MS.