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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"
----------------------
_________________________
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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#16968 - 05/04/07 09:41 AM Re: Do you ever get used to the injuries?
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Rebecca,
If you'd like to try the Actiwrap, email me with your address and I'll send you some. Hope Calista's conjunctivitis has cleared up now.
Cheers,
Curtise

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#16969 - 05/11/07 08:35 AM Re: Do you ever get used to the injuries?
mumofcalista Offline
Member

Registered: 04/12/06
Posts: 38
Loc: Gold Coast, Queensland, Austra...
Thanks Curtise, but I think I've found an Australian equivalent. In addition, my local public hospital have supplied me with samples of some adhesive padding (hard to describe but its kind of sticky to hold it in place but doesnt bond to the skin and comes off easily). Im thinking this might be good for foot and waistband blistering/protection if Im game to try it. I also found out that they can supply a monthly order of dressings for free. None of our doctors volunteered this information though, I had to ask - unbelievable!
Cali's eyes are better now, thanks, but not before I managed to tear the skin under her eyes with the lethal weapon of a cotton ball! I was also shocked the other day to discover 2 rings of blisters around the top of her socks. I wonder when we will not be shocked any more?
Speaking of shocked, I have to leave my family on Sunday to attend a workshop in a different state. I thought I would bring Cali with me, as my mother lives in that state and having only seen her for a week since birth, I thought she would be delighted to spend time with her last grandchild for 3 short days. Apparently not - too hard. I didnt think I could be hurt anymore by other peoples reactions, but this knocked me for six! Anyway, all 4 of my kids are being looked after by my husband while Im away, and Im very anxious about how Cali will cope, as we've never been separated. Anyway, I'll just have to try to enjoy the break! Thanks again, and if I have any luck with these dressings, I'll let you know.

Cheers,
Rebecca

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#16970 - 05/12/07 02:14 AM Re: Do you ever get used to the injuries?
pauline5 Offline
Member

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

yes, I get the blister rings from socks also, and that is usually due to how tight the elastic is around the leg...always try and get loose/not elastic banded socks...

I also find it can increase the fluid retention in the ankle and lower leg area when socks are too tight...

Pauline

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#16971 - 05/21/07 02:44 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...
Ah...the sock ring of blisters, how familiar I am!
I wear suits to work every day and have found that skirts are out of the question because nylons are so uncomfortable and stick. So I wear pant suits with dress socks and the funny part is that I always buy different heights of socks so that I can vary them throughout the week.
Most of my blisters will heal up over night if they are not irritated again so I'm careful to avoid having the sock ring in the same place.
Isn't it interesting what we have to keep in mind when clothes shopping compared to others?
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16972 - 05/21/07 05:20 PM Re: Do you ever get used to the injuries?
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
Wow so many great answers.. I myself depending on where my sore is, is whether or not it is painful for me.. of course things like papercuts and accidentaly cutting yourself with a knife is much more painful (i recently cut myself with a knife as i was cutting an apple for my son).. Its been about a week and that stupid thing still snags and hurts every once in a while.. I have had many sores, blisters, infections, and depending on where they were is how i would judge the pain.. but like many people it would hurt bad at first but the pain does subside.. sometimes more quickly than others. Blisters on the other hand are much more painful for me. Again i can only speak on my behalf. In my opinion its like my skin is getting stretched and about to pop depending on how big the blister was.. if it was an infecteous blister those are very painful.. I hated those because then i would be out of school depending on how many there were and how bad i was. I remember a time when i was in high school and i had infectious blisters from head to toe.. one morning my mom came in and woke me up and tried to take my blankets off and trust me i woke up.. the blankets were stuck to all my blisters...so my poor mother who felt worse i think then i did.. I was still in pain physically.. but she had the emotional pain of knowing it was something she did on accident that caused me such grief.. she had to call two of my friends from two different schools to get out of school so they could pick me up from my bed and carry me to the bathtub so we could begin another painful process of soaking off the blankets...

For me i will say there are times when something happens in which i think the pain is unbearable and there are other times in which my friends are looking at me in pain because they see a sore that i haven't noticed yet...lol kinda funny how it all works out..

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#16973 - 05/22/07 06:35 AM Re: Do you ever get used to the injuries?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Oh Crystal, I felt every inch of the pain with your description just then...
So many infections from head to toe here, and I can relate so much to the sheets sticking to them...and the TERRIBLE BATH TIMES, TO CLEAR THEM UP, PURE TORTURE...

so glad we grow out of that worst stage...AREN'T YOU????

Love Pauline

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#16974 - 06/05/07 11:57 PM Re: Do you ever get used to the injuries?
mumofcalista Offline
Member

Registered: 04/12/06
Posts: 38
Loc: Gold Coast, Queensland, Austra...
Well thats certainly something to look forward to...not!

How great it is to be able to discuss these things with people who have had the same weird experiences. I will definately invest in different lengths of socks, and even second hand ones that may not be so tight (not that I have bought tight ones anyway, I guess new socks are just too firm). I have assumed that socks would be essential with all shoes (we live in a warm environment where sandals are worn most of the time). Is anyone able to wear sandals with no socks?

Thanks for your advice and suggestions. Please continue ot bring it on - this is so helpful for those of us who are trying to solve these strange problems - the sales ladies just dont understand?!

Cheers,
Rebecca

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#16975 - 06/06/07 09:29 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...
Good question about the sandals.
I find that I can wear sandals but that I have to watch where the edges of the straps are to make sure I'm not blistering too much. I have different pairs that have straps in different places. I definitely cannot wear the ones with a strap or post that goes between the toes, such as flip flops.
Because I don't have palmo/planter as most folk on this site do I usually prefer to go barefoot in summer. The soles of my feet are just fine and any kind of shoe can cause distress to the top of my feet.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#16976 - 06/06/07 10:35 PM Re: Do you ever get used to the injuries?
Jr88 Offline
Member

Registered: 03/13/04
Posts: 36
Loc: Vancouver, BC, Canada
I have found that the feet seems to be one of the highest areas of infection, so socks is important. Without socks, your exposing the infections and blisters to dirt, injury and everything else that comes along with bare feet. Another thing I have noticed is that I need a new pair of socks everyday, it does add up on the laundry a little bit, but it certainly cuts down on the infection. Infected feet is the start of a bad day!
Socks with Sandals apparently is fashion taboo...but are we all fashion models?

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#16977 - 06/07/07 06:53 AM Re: Do you ever get used to the injuries?
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Infected feet is the start of a bad day!
Socks with Sandals apparently is fashion taboo...but are we all fashion models?[/B][/QUOTE]

HEHEHE, SOOOO TRUE ON BOTH POINTS...
No, I can't wear shoes without socks...never
I was wrapt when i first found out about Crocs...and i bought a pair, and after a while wondered why my feet were still blistering,
but you know what...I had a size too large for my feet, and i guess it was the friction of them rubbing on my feet...

Now i have the smallest size there is, and no more blistering...Actually I can wear the crocs barefoot for a little while just around the house...but as poeople say on here, much prefer with socks...for hiegene reaons.

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#16978 - 06/11/07 01:31 PM Re: Do you ever get used to the injuries?
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I STILL tear off skin on a regular basis by running into walls, chairs, everything. I am pretty clumsy and my fragile skin just makes it look worse than it is.
First, my best friend is COHESIVE bandage, which only sticks to itself. It basically like ace bandaging but it helps keep a gauze pad over a wound and keeps the bactracin in place.
Second, my Mom learned early on to pack a first aid kit for me and leave it at the school office every school year. They were constantly sticking band-aids on me even when I told them not to. Frankly, my Mom taught me this white lie: I am allergic to adhesive and cannot have it touching me. Schools are so freaked out about kids and allergies that they stopped sticking stuff to me. It's kind of a last ditch thing to say when they are coming at you with a band-aid and it's not a total lie, adhesive gave me horrible infections, worse than the boo-boo the band-aid was covering.
I think that packing your kids first aid kit is one of the best things that you can do for them, by the time they start going to school they will know how to treat their injuries better than anyone else.

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#16979 - 06/13/07 07:56 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...
Glori - you reminded me of a time that I went to a non-urgent care clinic after work to have some nasty leg blisters dressed. They were spreading and I just wanted them covered up professionally for one night to allow them to heal.
The doctor was so freaked out by my condition that he wanted to admit me and put me on antibiotic iv. I was flying to see my fiance the next day and was not about to let that be delayed. I ended up giving him a lesson on ich and how to bandage something properly.
He had the arrogance to tell me that I was putting my life at risk and that I would be admitted within 3 days. I went back three days later (it was a short trip)to show him how the blisters had healed and he had to eat his own words.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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