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#16626 - 04/04/04 02:41 AM Re: My son has EHK
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
I would be a little carefull in using lactic acids and saliciylic acids on a child that young. At least only use on places with thick skin.
Asuming that you have the same products in Norway as I do in Denmark, I would recommend Yamanouchi - Locobase Fett creme http://www.yamanouchi.no/page.asp?pageID=182
and some Vaselinebased baby creme with Zincoxide for the inevitable blisters and patches of raw skin.
Then if the need arises your can "upgrade" to some of the products with alpha hydroxy acids (there are several).
As for the baths then a good thing would be to add some salt (seasalt if possible) to the water - many have good experiences with that.
Of course not as much that it gets unpleasent ;-) .

Do NOT expect miracles, if the genetic diagnose is correct and it is EHK, that your child has. It is going to be a tuff battle both physically and mentally, but the most important thing is to make the child feel loved and confident with the skin.

And do read through a lot of the posts on this board - most is helpfull and valuble information, but do try to form your own experiences, and not try everything at once ;-) - most remedies dont work immediately...

Feel free to mail me if you like.

Regards Niels
Ha det... ;-)
_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
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#16627 - 04/04/04 11:51 AM Re: My son has EHK
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
I thought this might be a good spot to post something my 11 year old son with EHK told me the other day.

We have a new baby in our extended family and it got me remembering Evan's birth. We were sitting at the dinner table talking it over a little bit and discussing how scared and worried Mom and Dad were because we didn't know what was wrong with Evan or how bad everything would be. I mentioned we were scared that it was something bad because we didn't know. His reply to that statement without us prompting or asking a question was, "It's not that bad mom." That just made my day that at least at this point in his life, he doesn't see it as so bad.

Dee

[This message has been edited by Deidra (edited April 04, 2004).]
_________________________
Dee

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#16628 - 04/14/04 11:23 PM Re: My son has EHK
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Monica:

In my case, I am a 39 year old adult with EHK, the thick scaling started when i was about 3 years of age (prior to that, extremely raw, infected etc) AND...the scaling stayed pretty thick and all over, until I was in my mid to late 20s (I guess) hard to remember now...

Now my skin is the clearest it has ever been, except for my knees, elbows, buttocks, and inside knee and arm flexures...

The finer scale is still on my face, neck and forearms, and lower legs. So, don't panic, your child should improve with age, and time...There are exceptions of course...

Actually I don't like that word improve...whether we have lots of scale or little of it...it doesn't mean we are worse, just look different that is all...

Try to remember that EHK is literally a build up of excess skin...it is not a rash...except for blistering, heat intolerance, and the discomfort from prickly scale...Much of these elements can be controlled by us to a certain extent...So you can often control the level of discomfort or pain...VIA ALL THE ABOVE WAYS...

And Dee, you are sooo right with what Evan said, 'physically' "it is not that bad"...just more skin than most...simple as that...

If all parents of newborns can try and see it that way, and not feel guilty for 'causing a terrible skin disease'...don't call it a disease...it is just excess skin, which can cause various complications, which 'can' be managed...

jennifer, can you tell me more about your husband's corneal abrasions?...Does he have dry eye problems like I do? Is that what has caused the abrasions? And what does he put into his eyes...OOPS, I think you said vasaline?...My eyes are a nuisance for my studying/reading...dry out after only 10 mins, and have to put tears plus into them...

If you have any tips can you let me know?

thanks
Pauline...

GEE I forgot about my BEST ASSET...the soles of my feet...are extremely thick and havne't changed at all...but that is a good thing, because I wouldn't be able to walk if not for them...And I cut some of it off with a scalpel...but the sand blaster sounds fun, and pure ecstacy...I used to love it when I was a child, and the District Nurses would come and sand them over after scalpeling them...Aww...it was beautiful, I didn't want them to stop...

[This message has been edited by pauline5 (edited April 14, 2004).]

[This message has been edited by pauline5 (edited April 14, 2004).]

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#16629 - 04/15/04 01:17 PM Re: My son has EHK
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Pauline - I think you're absolutely right about this not being a "disease." It isn't. It is a genetic disorder where the skin grows too fast. That's it.

However, I disagree about whether it improves or not. Skin tears and blisters and cracks are painful and annoying and can cause developmental delays in very young children, so I would have to say that if the skin improves in some areas, that is a good thing for general lifesytle reasons. Also, newborns tend to have very fragile skin to begin with, and after about 6mo or so it finally improves into more adult skin that can tolerate even mild rubbing (like clothes!)

As for the eyeballs, Brian uses Lacrilube, which is a sterile variantion of Vaseline. We also use Genteal, which is a gel that makes everything blurry for a few minutes, then it clears up. A third thing he uses is preservative-free saline eye drops. He is usually okay through most of the day, and the eyes dry out in the evenings and overnight.

I'll check in later...MIL wants to give Nathan his bath, and I have to go file his hands and feet first.

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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#16630 - 04/16/04 01:18 AM Re: My son has EHK
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Jennifer

The reason I say that most of us improve with age, is that I don't know if you are aware or not, but I lived in hospital until I was 6 months of age...So I was very severe as a child, and then I had about 30 more stays in hospital until I was aged 8 or so...

I know only too well that we still have the blistering, cracking, and fragility, after all that is why I am on a disability support pension, and am unable to work full time, or in a regular physical employment capacity...

For example: My sister usually comes to our house to maintain my garden for me, plant new seeds etc...But I thought, bugger it I am going to give this a go myself the other day....

So I used a padded kneeling bench, and dug the soil up, with spade, and planted...And when I went to bed, all my legs were red raw, water blistered, and a minor bump would have tore all the skin off, it was so thinned down...

My hands felt fine at that stage, little tender, BUT, next morning, I could hardly use them for the first half of the day...

I may not be the most positive person when it comes to psychological and social issues, but believe me I am very positive regards making the most of our conditions, and not complaining about the daily damage done from doing ordinary tasks around the house...

MY PHILOSOPHY IS: do what I can, because I know that my skin will recover soooo quickly, (except for cracked hands, that takes days to heal)...because then you know you have achieved something, and not gone without feeling as capable as the next person...

I will however STOP AT DOING DAREDEVIL ACTITITIES (BOYS STUFF) they know who this is aimed at... LOL [img]http://www.ichthyosis.com/ubb/smile.gif[/img] But they are just as normal and routine activities for the guys as the house stuff is for the girls....HOPE I DON'T SOUND TOO SEXIST HERE...NOT MEANT TO BE...I am really a tom-boy at heart...

So, after that long speel, Jennifer, to me improvement with age, means staying out of hospital for the first thing...And I think as children grow older, they learn to find alternative ways to do the same things as other children, that won't do the most damage to their skins, and allow them to do more stuff...

I had better leave it there, this is starting to sound like I am getting back to my normal old (chatterbox, opinionated) self...

Love and care to all
Pauline.
XXX

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#16631 - 04/16/04 03:36 AM Re: My son has EHK
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Pauline, I totally understand. I have the majority of the household duties because Brian isn't physically able to do them. I paint, cut grass, hang curtains, whatever. Fortunately, my parents taught me to do these things instead of depending on my man. [img]http://www.ichthyosis.com/ubb/wink.gif[/img]

He, too, has a way of overdoing it and then suffering with walking difficulties and painful open sores. However, he has found success in working as a solicitor (lawyer).

I watched my neighbor's 2-yr-old ride her little car on the sidewalk this afternoon. She tipped it over and scraped her arm on the pavement. While her dad rescued her, I couldn't help but think that 6 months from now, Nathan doing the same thing would rip ALL of his skin off from that type of fall.

Then the other neighbor child came out dressed for soccer/football practice. She is 6. And then I thought about the hour I spent filing down the cracks and calluses on Nathan's feet so he will hopefully learn to walk soon.

Some days it is hard not to get depressed. Right now I'm pretty down. All my friends are pregnant with or TTC #2 or #3. And Brian is seeking to get a vasectomy. While I agree that we don't want more children to suffer from this, our gene is unknown, and it just kills me to think that Nathan will have to make the same life-altering decision in 20 years unless we can find the gene. And to do that, we need more children.

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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