My daughter was diagnosed 17 months ago at 13 years old. She has done steroids, IvIG and she is on Tysabri. Every MRI shows new lesions (she has had too many to count since her first MRI). Her neuro is thinking she might have progressive not relapsing. My question is what do they use to slow down the progression? Is PPMS terminal?
While we cannot offer specific recommendations or diagnoses, there are several things to consider. First, some kids need aggressive therapy to get their MS under control and new lesions on MRI does not mean a child has progressive MS – it usually means they have more active relapsing remitting MS. It is important to work with your clinician to determine if the tysabri is working. A new baseline MRI after four infusions would be the scan to compare subsequent MRIs to. If there were new lesions AFTER that baseline scan, then there should be a discussion about potentially switching therapy.
Benjamin M. Greenberg, MD, MHS
Director, Transverse Myelitis, Neuromyelitis Optica Programs
Director, Neurosciences Clinical Research Center
Co-Director, Pediatric CONQUER Program
UT Southwestern Medical Center