My daughter has been dealing with constipation lately. Wasn’t sure if it is Risdiplam related or not. When she does poop and it’s soft it burns her bottom. She will get a raw butt quick. Any suggestions on how to help soften her stool? She turned one in December. She can eat soft solid foods by mouth and drink liquids by mouth. We have a gtube but do not currently use it.

Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more