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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 active lifestyle.
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 Lourie Center for Pediatric MS, 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.
Stony Brook University Hospital
101 Nicolls Road Stony Brook, NY 11794