Aquagenetic wrinkling that doesn't go away?

[Aboveallislove]

http://archderm.jamanetwork.com/article.aspx?articleid=712261

wondering if anyone else or their little one has aquagenetic wrinkling that doesn't completely go away? The above link shows pictures of what I mean. Ds palms have a permanent white area like in the top photo and this fingers are always puffy and white down the sides. His gi is the only one who ever even looked at it before and never said anything. He has quarterly tomorrow so ill ask dr but wonder if others have. It is definitely worse after being in water...we really limit water exposure and he keeps his hands out of the tub during bath time on a towel on the side but even the little that can't be avoid leaves him screaming from the pain. It does get better after a while but there are still those spots that are always like that....others have this? Any thoughts?

 

[justbecauseicannotseeit]

Hello! This does happen to me sometimes, and sometimes it doesn't... I can't seem to figure out a pattern, except maybe it's worse during exacerbations, or if it has something to do with the weather drying out my hands or something? Sometimes it will happen consistently for a while, and then never again for months at a time. Sorry I don't have any advice on how to get rid of it... I have heard a lot of other CFers talk about having this though, maybe some one else has some ideas? I hope you find an answer!

 

[Aboveallislove]

Thanks so much. I know some have it and some don't, but everything I've read days it goes away after some time out of water, whereas ds palms have white blotches all the time even after bei out of the water and his finger around the sides are the same, plus puffy. So basically if you look at the various pictures his hands have that all the time...not as bad as when he is just put of the water but it doesn't fully go away. It doesn't bother him other than right after being in the water but it looks really funky.

 

[Beccamom]

This happens to my daughter and I.

 

[Aboveallislove]

Can you do anything to get the swelling puffiness down or to get rid of the white blotches? Or is it just a funky visual hell always have?

 

[2005CFmom]

My daughter has this also, a white patch in her palm. It sometimes goes away, but don't know that we did anything different to make it go away. My thinking is that it was just sweaty palms that was keeping it "wrinkled". Maybe during times they are less sweaty it goes away? I just went and checked my daughter's palms because I know she had the white patches a few weeks ago. Both palms are still affected, but one less than the other. She said it had almost gone away, but has come back.

 

[Aboveallislove]

Thanks so much all and Teri great point re the sweating....totally didn't think of that but he does sweat on his hands and everywhere a lot and that makes sense. Cf doctor today said she could refer to dermatologist and that it was more severe than most she's seen but she had no idea what they'd do or recommend.....does anyone go to a dermatologist for this? Don't want to add et anther doctor to the mi but don't want to ignor if I shouldn't...

 

[MissAlexsBP]

Hello! I have aquagenic palm wrinkling and have for a while. When I was younger I would get the super wrinkly hands when in the water, but as I've gotten a bit older it's turned into a kind of burning when my hands get wet, especially when I make a fist. when I wash dishes or cut up fruit/veggies I wear gloves so my hands don't get wet.

At least for me, my pulmonologist has not had anything to make it go away or get better and I have a dermatologist but unfortunately he has also been unable to find something to make it improve. Personally, once a week or so I take a foot file (just from Walmart or something) and file my hands once I'm out of the shower. It sounds strange, but it seems to kind of flake off the white bits and give my skin a bit of a rest. After that I like to use a hand scrub then put on some lotion. That's just what I do. I haven't heard of anyone else using a file, but I haven't had an negative effects, as long as I only do it a little bit.

I'm interested to see what other experiences people have had and if any solutions have been found!

Good luck!