Reply To: Six Weeks Off of IVIG – Hoping For Remission
Emily responded really well to the IVIG at first too. Within 24 hours of her first infusion she was running down the hospital hallway. We are very fortunate to have a neuro that was willing to give her infusions as her body needed them & not go by standard protocol. I honestly believe that’s why she is as active as she is now.
Emily’s neuro wants to take her off of IVIG to see what will happen but I’m not comfortable with that. We’ve kept her on the same dose, 20 grams per infusion, since she was 4. She’s more than doubled in size since starting & we’ve gone from infusions 2-3 times a week to infusions every 5 weeks. We will go to every 6 weeks this summer. I feel like after we get past 7 weeks then I will feel more comfortable stopping the IVIG. I strongly believe she will be in remission. Emily also believes it. She told me the other day she thinks she will be done with CIDP by the time she’s 13. FINGERS CROSSED!