Date: 09/09/2021

Q: Hello! My son has CIE with thickened skin on his hands and feet, which can crack if they get too dry.  We've had a few experiences at the beach where he seems to get blisters on his feet and/or hands after being exposed to sea water for a while. And he complained that it stings and hurts (he's 2.75 years old so not very precise with language yet).  At first we thought he touched some irritant in the water (jellyfish, etc), but it seems to be the salt water itself?  And it's not an immediate reaction, it's after his skin has been exposed for like half an hour.  Has anyone experienced something similar?  The pain and blisters did go away on their own (we did rinse with fresh water, but not sure if that's what helped).  Thank you!

A:

• My daughter has CIE and sometimes is totally fine in the water and sometimes screams (she’s only 2 so hard to get the reason also!) Other times she’s fine in the water and then it hurts when she gets out. She is usually ok when we get her under the fresh water and she seems worse when she gets really cold!
• When there are fine cuts...cracks on the skin the salt water stings badly...it happens to me all the time.
• Yes ??, since my daughter can talk she always said the salt water stings her skin. To the point that she is 16 and still won’t even dip her feet.
• Wow- I’m sorry he experienced that. My almost 16 year old with CIE always feels the best in saltwater at the beach. My in laws even changed their pool to saltwater because it is so beneficial to him.
• I have witnessed painful overhydration or waterlogged skin, this seems too soon for that though.
• There are sand socks made for beach volleyball players, in a thinner neoprene, which may offer some protection and perhaps get an hour of fun before it's time to rinse off.