CIDPTurtle

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  • December 13, 2017 at 12:12 pm

    Frustratingly slow is a mantra we know. Two steps forward and one step back is a familiar dance too. But I love “long curvy road with speed bumps and a frustratingly slow speed limit!” My daughter has the desire and sometimes the energy to want to work harder or get better faster, but then we have days like this morning. It took an extra 15 min to get my daughter moving this morning. She’s stiff and in pain from last weekend’s infusion. We’ll have 2-3 more tough mornings, like this, then she’ll hit a good stretch of mornings.

    It’s a disease I wouldn’t wish on anybody. We keep a blog here: http://www.pragmaticturtle.com I try to post the things that have worked for us to share with others.

    December 12, 2017 at 11:26 am

    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!

    December 12, 2017 at 11:08 am

    Hang in there, Mama! Nothing happens fast in this disease.

    My daughter’s onset started in August of 15, but she wasn’t diagnosed AIDP until May of 16 and was later switched to CIDP in July of 16. She was paralyzed up to her shoulders at diagnosis, but we thought we had skipped the respiratory and digestive paralysis. The first 6-8 months of treatment, and even on occasion still, she will get incredible stomach cramps,intestinal cramps, or have problems swallowing. My gut says that there was more paralysis going on there than we suspected, I also think the pain comes as the nerves repair themselves. It seems like her digestive complications happen more after IVIG, but overall they have lessened over the 16 months we’ve been at it.

    It’s an incredibly mysterious disease. I keep a log of all her medications, symptoms and side effects, just to see if I can find any pattern to things. I hardly ever do, but some of the data is helpful in predicting when things might get rough again.

    Our family has kept a blog for a year now and we share as man helpful tips as we can. http://pragmaticturtle.com. Hang in there and hold each other tight this holiday season.