My son has had his port for a little over a year (he was in the trial). It's been relatively smooth. It freaked him out at first (he'd just gotten used to arm pokes) but infusions are no big deal now. He does have discomfort from it sometimes, particularly if he gets a bit dehydrated - so another reason to keep fluids up. If you have specific questions, feel free to contact me directly (email@example.com).
My son has had his port 1 1/2 years and we have not had any issues. In fact, he no longer feels the infusion needle each week.He likes it and just said that he prefers the port to the IV's..."they don't have to 'fish around' for my veins anymore--they always get it right away now." Like Catherine said about hydration, I couldn't agree more. Our son carries his water bottle on him regularly. He knows he needs to drink a lot and he only drinks water.
Does Exondys 51 help DMD amenable patients?