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#16958 - 04/20/07 12:22 PM Do you ever get used to the injuries?
mumofcalista Offline
Member

Registered: 04/12/06
Posts: 38
Loc: Gold Coast, Queensland, Austra...
Hi guys,

havent been on in ages. Calista is now 18months old and walking. I think I have my head around most parts of ich now, but the injuries still get to me.

This afternoon, Cali got her hand caught in a plastic see-saw that wasnt really rough or sharp - anyone else would have barely been scratched. Well, she panicked and pulled it out and it sliced through her skin like it was butter - I'd never seen anything like it. I disinfected the wound and within a minute she was back into toddler mischief. I, however, felt faint and nauseaus and have still not recovered.

Parents, do you ever get used to this? How do you dress these wounds on a toddler? Im assuming any adhesive is out.

EHK adults, can you describe the pain of this type of injury in a way that I could relate to?

Cheers,
Rebecca

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#16959 - 04/20/07 07:29 PM Re: Do you ever get used to the injuries?
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You do get used to it, but it kills everytime it happens. Mine are 4 and 16mo. My 4yo rarely gets injured now, so it does get better as they get more coordination.
_________________________
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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#16960 - 04/24/07 11:17 AM Re: Do you ever get used to the injuries?
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Hi Rebecca
Nina's nearly 16 months now, just behind Calista, although way behind her in terms of development - Nina doesn't even stand yet, let alone walk! So I can't really comment on your question about injuries, but I wanted to reply to say hi and ask you about something you mentioned on another thread (cross-threading, I suppose...)

You mentioned using soap in the bath had helped reduce the build up af thick skin. Nina's skin has got quite thick around the flexures and the Calmurid cream (10% lactic acid, 5% urea) doesn't seem to do much, so I'm really wanting to find something that will work. I know the dermatology orthodoxy is soap=bad, but I have heard of another child with EHK benfitting from a long soak in bubble bath, much against the derm's advice...

What kind of soap do you use, and are you still finding it helpful for Calista's skin?

Best wishes,
Curtise

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#16961 - 04/29/07 01:53 PM Re: Do you ever get used to the injuries?
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Mom/Mums!
I am an adult (34 yr old) with EHK and I found your question about how it feels to cut or tear very interesting.
I have had freinds tell me, over the years, that they don't understand how I can tear my skin and just keep going. I also have trouble "translating" the feeling because I have never had normal skin so I went to my husband for help.
The best similie we can come up with is that it is like spilling hot wax on your skin. It hurts quite a bit initially but the pain dies off dramatically after a couple of seconds. The next time it hurts is when water is poured on it and then when the scab cracks. As a child I detested water because it hurt so much to get in. I believe the scabbing is the most painful part of the process.
I do hope this helps. I honestly think that it does look a lot worse than it feels.
Sarah
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16962 - 04/30/07 01:04 AM Re: Do you ever get used to the injuries?
dslacker Offline
Member

Registered: 08/26/00
Posts: 61
Loc: Copenhagen - Denmark - Europe
Very good describtion, which I fully support - The thing to remember with EHK is that the wast majority of scrapes is only removal of the "surface"-layer, which have practically no connectiion to nerves. Its when skin cracks its really painfull, because there the damage is much deeper and is more reminicent of a cut and then when our rapid skin growth tries to fix it, it may still be somewhat painfull due to the 2 surfaces rubbing against each other. Does that makes sense ?

Blisters is a whole other discussion ;-)

------------------
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
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_________________________
The Danish Slacker
-------------------------
dslacker@trustme.dk
"Have you got the will to be weird"
----------------------

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#16963 - 04/30/07 10:42 AM Re: Do you ever get used to the injuries?
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Hi everyone,
My 14 year old with EHK rarely gets injured now. It was very hard when he was younger. Once he could talk and say it didn't hurt that bad, it was a little easier. Or when I would ask him how he got such and such a scrape he would look at it or ask me where it was and say "I don't know." I guess it couldn't have hurt too much if he didn't know he had it. It does hurt the heart though when you see a big piece of skin torn off. He was actually almost proud seeming when he was younger and came home with a good abrasion at recess. He would mention that his schoolmates couldn't believe he just got up and kept running after he fell. They kept asking him, "doesn't that hurt?"

Adults with EHK, thank-you for explaining to us parents what it's like. We can only guess.

One helful solution we found when the water had to get into the open sores was to apply Elizabeth Arden 16 hour cream to the abrasions before baths. You can buy it at Elder Berman's and Penny's. It used to come in a tube and is more of an ointment. Of all the things we tried when Evan was little, this one applied easily and stayed on throughout the bath.

Deidra

[This message has been edited by Deidra (edited April 30, 2007).]
_________________________
Dee

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#16964 - 05/01/07 06:58 AM Re: Do you ever get used to the injuries?
mumofcalista Offline
Member

Registered: 04/12/06
Posts: 38
Loc: Gold Coast, Queensland, Austra...
Thank you so much for your thoughtful descriptions of the skin tearing experience. Its very reassuring to know that it doesnt seem to hurt as bad as it looks. Dslacker, (and everybody else for that matter) please tell me what the blisters are like. Also, I still need to know if anybody has ever used any type of adhesive to dress wounds. I have used tubifast while she was a baby, but she just pulls it off, now that shes a toddler.

Hi Curtise, the girls are growing up arent they? Dont worry too much about Ninas development. It may be just a Nina thing. I have the benefit of 3 non ich slow developers, (now in the gifted & talented program at school) to give perspective to what is ich related and what isnt. Calista actually beat my son to walking (17 1/2 months vs 18 months), and everyone knows someone with no problems who didnt walk till 2!

In answer to your question about soap, Im still trialling different soaps, always preferring less toxic skin care, and so far they all seem to work the same. The flexures are the hardest to exfoliate, but they too, thin down and also lose the brown colour after a while. Looking at a 3 year old and 10 year old who have been managed in this way all their lives, the distinctive skin ridging remains, but is the only sign of EHK that can be seen.

Interestingly, Calista has had conjuctivitis for the last week, so I have ignored her skin, as she is traumatised enough by her eyes, and her skin has build up and got so brown so quickly its amazing.

Cheers,
Rebecca

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#16965 - 05/01/07 03:32 PM Re: Do you ever get used to the injuries?
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I can't really comment on the blisters, as the type we have doesn't do that. But I hear you on the weird injuries. Elliot was walking and carrying a sippy cup yesterday. He fell and now has 2 sippy-cup-nozzle-shaped scrapes between his eyebrows. Nathan fell off the toilet a few days ago and hit his forehead on the TP roll holder. He has a dent right at the hairline. He also leaned back on the plastic slide out back. His back scraped against the lip at the bottom and he has 5 scrape marks down his spine where the vertebrae stick out.

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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#16966 - 05/01/07 06:58 PM Re: Do you ever get used to the injuries?
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Like you, we use Tubifast to keep dressings in place, but Nina is increasingly keen to pull at them when she can reach them. It made doing her dressings when she had a skin infection incredibly difficult! We also have something called Actiwrap, which is another retention bandage but in a single layer which sticks to itself. Not terribly firmly, it has to be said, but it might be worth a try if you can get it. Or would it be possible to use tape over the top of tubifast or Actiwrap to hold the dressing in place, but obviously not against Calista's skin? Just a thought.

I had to smile about this thread, as Nina has sustained an injury herself today - she cut her chin with the end of a bread stick! Not often that girl misses her mouth where food is concerned...

Thanks for the reply about the soap - currently plucking up courage to try it!

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#16967 - 05/04/07 01:34 AM Re: Do you ever get used to the injuries?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Calista's Mum

Oh boy, i have had heaps of large rips off my skin over the years...

when it actually rubs or comes into contact with some object, the skin actually slides off, and in my case it actually folds in on itself...Nowadays as an adult, I actually carefully unfold it, and cover the wound back up with the skin that was already there, this way it tends to stop germs getting in and prevent infection, and kind of acts like a skin graft, and after a day or so you can hardly tell it was ripped open in the first place...

BUT AS A CHILD: my mum would first cut off the ripped piece of skin, and it would be blood raw underneath ... the main thing is that it stings like hell, and they would put some sort of cream on it (can't remember, this is between 43 and 33 years ago mainly) and the idea is to put a pretty thick layer of cream on a piece of gauze, and then bandage the whole area up, that way you don't need to put any kind of adhesive tapes over it....WOE, THAT WOULD HAVE BEEN OUT OF THE QUESTION FOR ME, OR EVEN NOT THOUGHT OF...

I would be terrified at bathrtime, while the wound/sore was still fresh, and would request that some vasaline or the like was covering the wound before entering the water, although in hindsight this may have defeated the purpose of getting some salt/water into it...

Just be thankful that we heal remarkably quickly, I personally like some others find the healing process the most painful part or annoying at the least as it heals, the skin tightens up, sort of pulls itself in...and cracks...so it is very important to keep it moisturised to minimise discomfort, and also REDUCE TIGHTENING OF THAT JOINT IN WHICH IT IS CLOSEST TOO, TO PREVENT CONTRACTURES/SHORT TERM HOWEVER, and prevent restricted movements as a consequence...

I might describe blisters at another time, but basically I have about 4 different types...

I need to visit here in small bursts, very exhausted lately...

hope this helps, and hope not too graphic, but just trying to ease the pain for your daughter...ESPECIALLY VASALINE AT BATHTIME, AND PADDED GAUZE LADEN WITH CREAM BEFORE BANDANGING...to reduce it sticking and just reopening it all over again...

Love Pauline

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