Reply To: Just trying to understand
I don’t think I got really scared for my daughter until we were doing IVIG treatments and the symptoms kept worsening. NOTHING happens fast with this disease, so take a deep breath and let go of timelines and deadlines, it will only frustrate you both. She did finally start to respond on about day 4, but we still struggled with symptoms returning in between her monthly treatments for the first 10 months. She’d be fine for 27 days, then couldn’t walk those last few days before infusion.
It’s takes a while for what we call the “good army” to amass the strength to wage a real war against the “rogue antibodies”. If you’re on steroids, that suppresses the growth of both the bad guys and good guys, so it takes longer to build that army of good antibodies. Until the good guts are big enough to wage a solid battle, it can feel like you are not getting your money’s worth out of these treatments. You are, just hang in there.
My daughter’s onset was at age 11 in August of 2015. Diagnosis didn’t come until May of 16, when we did 5 days of inpatient IVIG. We returned in July to get a final CIDP diagnosis, did 3 days inpatient infusion and have been doing monthly IVIG for 16 months. We are fortunate enough to be at the point where she is ambulatory, back in middle-school and we are doing infusion treatments at home over the weekends. It’s a livable life, and that’s about as far ahead as we think, right now.
Welcome to the family, sorry you get to be part of this club. Hold your family tight this holiday season and when xmas of 2018 comes around you will be amazed at how far you have come!