Yes! I have noticed this with Andrew as well. He is 10, and will have his last treatment in DI today. We've even had a few episodes where he has what he describes as "tingly" all over -- like when your foot falls to sleep, but everywhere and very intense. It comes on suddenly, and really stops him in his tracks, crying, etc. (which is not like him at all). Even wearing clothes bothers him... last night he couldn't get to sleep because his underwear were "burning" him (his words). He tried on 4 different pairs to no avail and finally took another bath which seemed to help. I mentioned the issue to our nurse when we were there for platelets on Monday, and she hadn't heard of it but said she would look into it. I'm going to ask the Onc today. If they don't have any answers, I'm going to call his neurologist on Monday -- seems to me like this is nerve-related, or maybe a reaction to continual use of Neurontin -- Andrew has epilepsy, too, so he takes additional meds in that family of drugs and I thought that might be part of the issue.
I'm so glad you posted this question, I thought we were the only ones!
Kristen
www.aboutthewin.wordpress.com
