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#16669 - 09/19/04 07:17 PM Several question
Shirlil Offline
Member

Registered: 12/23/03
Posts: 22
Loc: L.A., CA USA
Hi all. It has been a while since I posted on this board. I have several questions that I hope I can get people's experiences so that we can compare. My daughter, Lily, is now 9 1/2 months. Generally she is doing fine. The thick areas are her knees and her neck. Her knees started thickening when she was about 6-7 months, when she first started crawling. Her neck also started to get thicker around the same time. We have kept it under control by daily baths and applying creams both AHA and moisturisers.

Her body is generally a bit dry. After she takes her bath about 20-30 minutes, you can feel the dryness, it is as though she has one extra layer of skin on her. After we put the creams on her, her skin gets soft for the next 24 hrs. and the cycle is repeated every day.

Here are my questios,

1. If anybody remembers, is this similar to your case?

2. At what age does the EHK go into full gear? I know this can vary case to case.

3. Is there a certain age, that you can say, for all pratical purposes, this is the extent of the progress?

4. What is your experinece if the face is affected. Her face does not seem to have dry skin yet, but is the most fragile part of her body.

5. I love to hear different methods every one has dealt with in keeping the thickness under control and in moisturizing. We have found Baby Johnson 24 hr. and Glycerin to generally do a good job. With all these metohds, can things stay under control?

I am sorry to ask so many questions, but people on this board are the only ones I can trust. I have found that the typicall answer from all Derms are just wait and see.

Sherry

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#16670 - 09/19/04 08:06 PM Re: Several question
AngV Offline
Member

Registered: 11/27/04
Posts: 23
Loc: Sartell, MN
Hi Sherry,

Well as for me, my mom can not remember when it started getting really bad, but as for Braden (now 5 months) his started to show signs of thickening around 3 1/2- 4 months. It is not really thick as of yet but the scale is there just like mine is but his is not dark like mine gets. His face is totally clear also and his hands seem to peel. His roughest spots are the inner thighs where diapers rub, ankles, and his elbows.I also do a daily bath for him and then I use aquaphor. Our new derm has suggested salex & protopic creams to use but I have not noticed any difference yet, it has only been a few days. What creams are you using that have the AHA and do they seem to burn?

My face as well as braden's is clear and mine always has been so I assume Braden's will be too. I actually get comments all the time about how great the skin on my face is, a very clear complexion.

Angela
_________________________
Angela

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#16671 - 09/19/04 11:40 PM Re: Several question
Shirlil Offline
Member

Registered: 12/23/03
Posts: 22
Loc: L.A., CA USA
Angela;

We use Eucirn Plus and some times a cream called AmLactin. Am Lactin burns a little bit, so we only put it on the rougher areas. We have also used Dermal Therapy Cream that has AHA.

What specific salex and protopic creams do you use?

Liliy's face is defenitely affected. What I mean is that her skin is still more fargile, so she always has some red areas (size of a dime or samller) where the skin has rubbed off or areas that is in the process of healing. If skin does not rub off for couple of days, then it is generally clear, not perfectly, but clear enough.

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#16672 - 09/20/04 04:16 AM Re: Several question
Anonymous
Unregistered


As far as the face goes, it will always be tender, fragile and will scrape and peel easily. However it is the clearest part of my body except for my palms and soles and seems to be in most cases of EHK. My face gets dry and slightly scaly, but nothing like the rest of my body, and it clears much easier. Generally I'd say by the time we are two years old EHK has fully "kicked in". I don't think it really gets any better with age, I think we just learn to take care of it better. I don't really use any creams unless I'm extremely dried out to the point of cracking and bleeding. Mostly I shower everyday and take a bath every other day, scrubbing my skin with 3m paint stripping pad or something similar. I'm not too fond of the derms "wait and see" advice. We know what will happen, the skin will get thicker and harder to take care of. Keep up the creams and lotions, soak in long warm baths and try and scrubb off any loose skin without making the skin raw. I've gotten my skin thinner then its ever been in my life without being on retinoids just by scrubbing it regularly over the last month or so in the tub.
Keith.
Keith.

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#16673 - 09/20/04 02:50 PM Re: Several question
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
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
_________________________
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"

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#16674 - 09/21/04 12:29 AM Re: Several question
Shirlil Offline
Member

Registered: 12/23/03
Posts: 22
Loc: L.A., CA USA
Thanks Kieth. Thanks Jennifer. Every thing you said was very helpful.

Jeniffer, Lily also has somewhat of a different cause for her EHK. She happens to have both dominant and recessive K10 gene affected, which means both my husband and I are carriers but not affected. Thank God our first son turned out to be O.K. Typicaly with EHK the dominanat gene is affected. We have been working with GeneDx and they have absolutly been great. They think, that her case is extremely rare. Her Derm. thinks this why her case happnes to be mild so far. So the term "wait and see" is taking on a new meaning for us. I guess we have to live on the egde for atleast another 3 to 6 months. It gets very discouraging at times.

By the way, does Tazorac have other possible negative affects? Is this not a form of retnoids? If not harmful, maybe we give it a try. we also tried Urea 10%, which was not very helpful. It was expensive so I had very high hopes. Now we have found that the Baby Johnson 24 hr. moisturizing cream along with Glycerin do a fantastic job. Go figure, more expensive is not always better.

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#16675 - 09/21/04 02:23 AM Re: Several question
Anonymous
Unregistered


Yes Tazorac is a retinoid, a topical retinoid. I asked this same question at the conference and the doctor told me that tazorac basically has the same risk profile as any other retinoid. Being that it is fairly new I'm sure they don't know all the longterm effects yet.
Keith.

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#16676 - 10/14/04 05:51 AM Re: Several question
milomilk Offline
Member

Registered: 08/12/00
Posts: 16
Loc: Melbourne,Australia
Hello.I probably don't have alot to add.As a child my neck,elbows,back of knees,crease of buttocks and feet particularly affected.Neck skin was dark brown.I found that hormone changes around time of menstruation saw a real shift in my skin for the better.Today I manage like already mentioned;keeping infection on the skin at a minimum thru.use of anti-bacterial wash every day and keeping the skin as stripped back as possible after each bath.How I look as an adult is totally different to presentation as a child.

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#16677 - 07/19/06 10:39 PM Re: Several question
bartempira Offline
Junior Member

Registered: 07/19/06
Posts: 1
Loc: Elizabeth, CO, USA
I too have had problems with corneal erosion through my life. My family thought it was some kind of allergy or worse (some kind of weakness on my part). When I finally got the true diagnosis in my mid 30's, I was given a course of treatment. I use Muro 128, which is over the counter eye cream that keeps the eyelids from sticking to the cornea. I also keep well hydrated and have not had the problem in years. However, when I was younger it was frequent and VERY painful.

I did not know it was probably related to my ichthyosis until I found your posting. I wish I had this information 30-something years ago!

Bart

Quote:
Originally posted by Hearsay:

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[/B]

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