Shirlil, Nathan is nearly 21 months. I noticed the same things that you are talking about probably right around 11 months, when he started crawling. We have had neck problems since birth. Our worst problems are the balls and heels of the feet, and the palms and wrists. The fingers and toes are pretty bad, too, but there isn't a lot we can do about those.

We have an unclassified ichthyosis that looks like EHK, but isn't a keratin problem, so things might not be the same for you.

We treat by:
1. shower every day - the steam seems to help more than the soaking. I put him in the shower stall and sit outside for 10 minutes or so, then come in too, rub him down with my palms, use his hands and feet to rub himself, or sometimes a baby washcloth. Once we're done rubbing, we use Safeguard soap. It seems to do a better job than baby soap for getting the smell out. We have also tried Dove, but it leaves me with no friction for rubbing. We use dandruff shampoo on his head. After the bath, we do a thick layer of Cetaphil (Kroger sells a very good generic version for 5.69 a jar). We dress him immediately, but I usually put a second layer of cream on the hands and feet 15-30 minutes later. Brian likes the Jergen's ultra Healing, but the Cetaphil is nicer if you can deal with the cost.

2. Every 2-3 days cut the nails. I use a nail nipper instead of baby clippers because I can get all the way down to the pink and have better control.

3. Every 3 days - file. We use a 100 grit nail file from our beauty supply shop. For Nathan, we use a fresh one on his hands every time, and reuse the one on his feet 3-4 times before replacing it. Brian uses his until they fall apart. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] We have found that lots of pressure hurts less than light touch. Light touch tends to rip the skin off instead of filing off just the top. We file his wrists and palms, but avoid the fingers for now. We do the balls of the feet and the heels, and also the knees.

4. Wintertime - humidifiers run in both bedrooms.

AHAs and urea do utterly nothing for us. Tazorac works, but it takes everything off until it is raw, so it isn't worth it.

I'd have to say full gear kicks in between age 1 and 2. Nathan's skin changed a lot for the first year, and it has been pretty constant since about 11 months. It is milder than his daddy's, but that has been true since birth, so we don't think it will chande further.

Nathan's face appears completely normal, but it is very fragile. He is always covered with scratches from hitting my glasses, buttons, zippers, fingernails, etc. We have just started into the temper tantrum phase, and he flails his arms wildly when he is mad. He bonks his head on the computer desk and other furniture, and sometimes rubbing his eyes is enough to scratch him, especially when wet.

One thing that we are experiencing that is new is dry eyes - his eyelids seem to be red all the time, like he's tired. So we have started putting eyedrops in - our pediatrician prescribed Patanol in case it is an allergy, and I have been using Brian's Lacrilube at night. Brian has severe corneal erosion. We are hoping to prevent that in Nathan. Brian doesn't know when it started, but he didn't start using Lacrilube until he was about 10.

I hope something in there was useful to you. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Jennifer
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Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"