Reply To: Newly diagnosed 13 year old child
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.