Has anyone gotten IV port in the chest for Exondys 51 weekly infusion? how was the procedure? were there any issues after the surgery?

Views: 633

Reply to This

Replies to This Discussion

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 (catherine.lake@stoel.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.

thank you. do you see improvements after being on exon 51?

Does Exondys 51 help DMD amenable patients?

Reply to Discussion


Need help using this community site? Visit Ning's Help Page.



© 2023   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service