My Son Is Two Years Old And Has Multiple Sclerosis

3/19/2015

Here is My Question:
My son is two years old and has been diagnosed with MS. He has 2 lesions on the spin and 9 Oligoclonal bands, but yet his doctor hasn't started him on MS medications. He gets IVIG (12g) every 3 weeks and solumedrol (30mg) every week... What are your thoughts?

Answer:
There are no approved therapies for pediatric MS, because they have not been adequately studied. It is hard to make specific recommendations without knowing the details of a case. IVIG has been used in the past with variable success. Many clinics have used therapies that are FDA approved for adults in children this young, but there are a lot of variables that go into this decision. With rare diseases like pediatric MS, we always recommend seeking formal second opinions if there are unanswered questions.

Benjamin M. Greenberg, MD, MHS
Director, Transverse Myelitis and Neuromyelitis Optica Program
Director, Pediatric Demyelinating Disease Program
Department of Neurology and Neurotherapeutics
Department of Pediatrics
Cain-Denius Scholar of Mobility Disorders
University of Texas Southwestern Medical Center

Lynn

5/22/2016 07:29:45 am

My son had his first MS exacerbation at 22 months. He wasn't formally diagnosed with MS till 5 but he never and to this day has not had Oligoclonal bands. He was started on Avonex at 5 (he is now 24). He has always responded to IVIG so we have been doing that for years and is now on every 3 weeks. Only gets solumedrol on exacerbation. The biggest mistake we did was to not get a 2nd or 3rd opinion till we were forced due to a physician leaving. They all have different opiniions. Good luck to you!

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