Hello! i just wanted to introduce myself. I was recently added to the group. My 10 month old daughter Belle was diagnosed with EB when she was about 5 months old. It's definitely milder, but we're not sure exactly what type. Her doctor wanted to hold off on doing a biopsy until she was a little older. It's definitely gotten much worse since she's been moving around and doing more. She's now crawling and getting into everything and mainly her hands and feet are affected by it.
I just had a quick question...over the winter we used thick, cushy cotton socks with aquaphor and it worked great to prevent blistering on her feet. Now with the heat it's just gotten horrible and we're not sure what the best thing to do is. Also, socks alone haven't been cutting it so we've been putting crocs on too (the only shoes that stay on and also haven't caused blisters). It's just the moisture that's causing her skin to just blister and peel almost completely off. Is there anything else that could be used? I feel like she needs the padding of the socks but they seem to be doing equal harm. Is there something I don't know about?
Thanks in advance! We don't have EB anywhere in either of our families so we're at a total loss with how to get a handle on this.