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#16616 - 03/28/04 09:20 PM My son has EHK
Monica Offline
Member

Registered: 03/28/04
Posts: 5
Loc: Norway
I am new in this forum, and would like to get in contact with other people that have EHK. I have a 21 month old boy with EHK. We live in Norway.I feel very helpless because I haven't got very much information about EHK from the doctors. Is it painfull? He also have something that can look like this in his mouth, is this normal? How dos warm weather/fever work for him? can he be allergic to food/pets? I really hope somebody can answer me. Monica

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#16617 - 03/31/04 02:35 AM Re: My son has EHK
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Monica, if you have read through any of the posts on this board, some of your questions may have been answered already. My son has a variant of EHK, but we treat it pretty much the same.

We bathe daily for 20m or so, then I use my own skin oil on my hands and rub his skin down to take the excess off. I also use his feet and hands to rub himself. Once we are done, I put a layer of thick cream all over. I use Cetaphil. My husband uses Jergen's Ultra. I don't know if those are available in Norway, but either way, you'll probably have to go through a few lotions to figure out what works best for your son.

We also use the heavy duty nail files to file down the callouses on the hands and feet. How often you do that depends on how severe your son's case is. My husband does it every other day. My son is done once or twice a week.

Another thing that works well for us is a hand sander, such as a Dremel. My husband uses that on his feet every other month or so because it is faster than filing. You have to be careful because it can build up a lot of heat.

Other things that work are using plastic wrap around the feet if the cracks start to affect walking. And the paraffin bath is a nice short-term humidifier. Speaking of which, we have a humidifier running at 45% all winter long.

And of course, the salt baths work wonders. I don't think it matters if you use Epsom or sea or table salt. I put my son in the bath with the salt for 20m or so, then drain the tub and take a shower with him like usual. It takes tons of skin off.

My husband has issues with corneal erosions. We put sterile petrolatum in his eyes every night to keep them moist. So far my son hasn't had a problem with that.

Both are prone to the ear buildup. The skin grows in the ear canal and gets mixed with ear wax/cerumen until the whole canal is blocked. An ENT can use a mini vacuum to clean them out, so you might want to find one and make an appointment to meet one before that becomes a problem.

As for heat and fever sensitivity: hubby has been sick a few times. He gets very dehydrated very easily. Child gets dehydrated too, so water and juice are always available. As for time in the sun, extreme heat for long periods can cause heat exhaustion in them because the thick skin makes it hard for them to sweat.

This disorder can be very painful and itchy. If we miss a bath, my son will scratch himself raw if I let him. I keep the nails cut all the way down and trim them every other day. If the hands and feet aren't filed, callouses build up, dry out, and crack, like little paper cuts all over the hands and feet. Pressure from turning a door handle or leaning on a palm is all it takes to make them crack. Once they are cracked, they are very painful to move and get wet.

If the skin is thick over a long time, it can force the bones to grow crooked. It is called ulnar deviation - the fingers split into a V because the skin has pulled them that way for so long. You can use a splint at night to counteract this.

Other stuff - Chlorine from a swimming pool tends to stay with the skin, so after swimming my boys have to have a full shower.

Allergies are not at all influenced by the skin issue that I know of. We have cats and there is no problem. If you have food allergies, your child is more likely to develop them, too, but not due to the skin disorder.

Anything else, just ask!

Jennifer
Nathan (15mo)
_________________________
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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#16618 - 03/31/04 05:16 PM Re: My son has EHK
Shirlil Offline
Member

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

We habe never used Cetaphil. Is this an exfolient?

Sherry

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#16619 - 03/31/04 06:16 PM Re: My son has EHK
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Just a nice thick cream that really helps to hold moisture in. http://www.cetaphil.com

We use the stuff in the green can. It is a bit stronger than the lotion in the bottle.

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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#16620 - 03/31/04 08:49 PM Re: My son has EHK
Monica Offline
Member

Registered: 03/28/04
Posts: 5
Loc: Norway
Thank you very much for all the nformation. My son did not get a diagnose before he was 1 year old. We went to severeal doctors who all said that we didn't have to worry and that it was just normal that children got dry skin. It was first when they tok a test of his skin that they found out that it was EHK. When we got this diagnose we were told that this was not painful,that it might helped that we gave him a bath every second day and put on some creme if we thought he looked dry. The doctors told us that they did'nt know very much about EHK. When I started to read this forum I realize that EHk are much more serious than we have been given an impression of by the doctors. Right now he has thick skin on both his knees,in his neck, very much under both his arms, on his stomach, on his legs, around his feet. It seems like it never is going to stop. When does it?
Monica

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#16621 - 04/01/04 12:20 AM Re: My son has EHK
Shirlil Offline
Member

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

As Jennifer said, salt bath does very good with removing thick skin. I use couple of tea spoon and mix it with her bath water. It seems to do a good job for her. We use pure sea salt. She does not have much thick skin. Maybe she will have it later on, I don't know. She is only 4 months old. There are other creams with AHA (Alpha Hydroxy Acid) that is supposed to help with thick skin, but we do not have much experience with them. You can look for differebt products in www.ichthyosis.com.

I am little surprised at the doctors. I can understand missing EHK, but did he have fragile skin or blistering at all during the first year?

Sherry

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#16622 - 04/01/04 06:55 AM Re: My son has EHK
Monica Offline
Member

Registered: 03/28/04
Posts: 5
Loc: Norway
When he was born, he had blisters all over his left leg. They said that newborn often had marks, but they had never seen anything like this. The doctor at the hospital used a needle to get the "water" out of the blisters. (hope you know what I mean, not very good in english) He also had thick skin from he was 2 month old.

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#16623 - 04/01/04 01:21 PM Re: My son has EHK
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Monica, your English is excellent. I couldn't even begin to write in Norwegian (I can read a little of Finnish, but that's because I speak German).

Unfortunately, it won't ever clear up. It shouldn't get worse unless you don't treat it. It is a lot of trial and error to figure out what works for each individual case. I hope my earlier post can get you started.

A lot of inexperienced doctors (and other medical people) will tell you to not give the child frequent or long baths. On the contrary, with EHK, you HAVE to dry the skin out in order to get it off. I have found that the steam from a shower works much better than a total soak in regular bath water.

My son's skin has changed since he was born. Since he is now crawling, his knees feel like sandpaper. Up until about 11 or 12mo, his knees were no worse than any other part.

Our dermatologist prescribed a compound that might work for you: 10% urea, 10% glycerin and 10% lactic acid in a cream base called Velvachol. Here the lactic acid is prescription only, so I can't make it myself.

Other things to try: Tazorac - a psoriasis medicine. It didn't work for us because Nathan is so mild.

Carmol 10 or Carmol 20 cream - it is a lotion with 10 or 20% urea. If they sell it in Norway, it probably has a different name.

Aquaphor - looks like petrolatun jelly, but works great on chapped lips or really dry spots.

I swear by the nail files. Those work better than any cream, so far.

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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#16624 - 04/01/04 05:00 PM Re: My son has EHK
Shirlil Offline
Member

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

I second what Jennifer said. Your english is perfect. I have also heard of cream called "Dermal Therapy" with 10% Urea and 10% AHA that is suposed to be good. You can order it on line. I have ordered it and I will let you know how it does.

I have one question for myself. You mentioned that you started seeing thicker skin around 2 months? Is the thickness getting thicker now or just more areas of the same thickness as before. I am trying to predict what might be the course for my daughter, as much as I know that every person seem to be some what different.

Sherry

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#16625 - 04/02/04 12:27 PM Re: My son has EHK
Monica Offline
Member

Registered: 03/28/04
Posts: 5
Loc: Norway
Jennifer: I will try to get some of the products that you recommended to see if they can help Markus.
Sherry: It seems like it start with the area getting white, then he gets very dry skin and then the thick skin occurs. His left knee is really bad. I think it looks like it is getting thicker and he gets more and more small areas with thick skin.

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