Here is My Question:
We will be asked to choose my sons (age 12) next DMD at CHOP. I am looking for advice. Here is some background: first symptom at age 8 (blind in one eye and 20/400 in other). Treated with azythromicine, steroids, vitamin D, PLEX, IVIG. Sight back to normal within two years. Other MS symptoms since have been a limp, tingling in feet hands, side. Started Plegridy in Sept 2017. Metal and emotional changes and an increase of side effects so we are changing treatment. He has a very bad fear of needles IV and injection and this causes him much stress. Doctors don't want him to take oral meds. I want to choose the best one for him and one that if he is going to need to go through the stress of a needle poke he will think it is worth it because he will like see an improvement rather than bad side effects because of the treatment. What are the pros and cons of our choices? Also he had two new brain lesions while on Plegridy.
Choosing a disease modification therapy for children is always complicated. CHOP is excellent at helping families decide. The first thing they will do is ensure they have an accurate diagnosis and then take you and your child’s concerns and specific information into account. They will help you and your family make an informed decision
Benjamin M. Greenberg, MD, MHS
Vice Chair of Translational Research and Ambulatory Care
Department of Neurology and Neurotherapeutics
Director, Transverse Myelitis, Neuromyelitis Optica Programs
Co-Director, Pediatric CONQUER Program
UT Southwestern Medical Center
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