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#26931 - 09/30/10 06:35 AM New - Looking for information on EHK
Aussie Mum Offline
Member

Registered: 09/30/10
Posts: 26
Loc: Australia
Hi,
My daughter (just turned 2) has EHK, neither of our families have any skin issues and so we have been on a very steep learning curve the past 2 years.

I am now trying to gather as much information as I can to see what else we can do to try and help her. And also try and find other families in Australia as I would love to meet others and I think this will important for my daughter as she gets older.

Thanks

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#26933 - 09/30/10 04:11 PM Re: New - Looking for information on EHK [Re: Aussie Mum]
Lianna Offline
Member

Registered: 09/30/10
Posts: 6
Loc: South africa
Hey there. im 20. female. Im from SA. I have EHK. I would love to give you advice. My father has it as well, so between us there is a lot of knowledge about EHK.

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#26938 - 10/01/10 11:52 AM Re: New - Looking for information on EHK [Re: Lianna]
Aussie Mum Offline
Member

Registered: 09/30/10
Posts: 26
Loc: Australia
Hi Lianna.

Thank you, any information you can give us would be great.

I have a couple of questions, will start with 2

She is too young to tell us what is going on, and some times she seems stiff, and other times I think she is just being silly and walking funny!! But could the build up of skin on her knees and ankles be making her stiff?

What is the best way to remove the build up? She always had a really deep bath and we try to gently remove the skin but haven't had much success. She also gets a big build up on her scalp, what would be best to use on that?

Thank you again, we really have no idea what we are doing and want to do the best for her.

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#26939 - 10/01/10 12:56 PM Re: New - Looking for information on EHK [Re: Aussie Mum]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I also have EHK and so does my dad!
I have my best luck with a bath with just a shot of oil in it. Too much and it's just too greasy, but one good squirt really softens my skin. The trick is not to soak too little...I know that's hard to do with a squirmy two-year old! Anything less than about 45 minutes doesn't really do much for me. A solid hour and then I can really start exfoliating.
I get the funny-stiff walk if I have been in one position for too long. It's a lot like the skin has molded to one shape and now you are trying to make it move another way. It has been shown that having Ichthyosis in many forms causes stress on the joints because it pulls so tight.
Even though I lose a LOT of skin during and after a bath, my skin is still very dry and I prefer good old petroleum jelly afterwards. It takes a while to soak in, but I am softer and looser for the next 12 to 24 hours.
We all have different ways of coping with it so hopefully you can find something in all of this that works best for you.

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#26951 - 10/04/10 04:41 AM Re: New - Looking for information on EHK [Re: Aussie Mum]
sophiesmum Offline
Member

Registered: 12/11/08
Posts: 24
Loc: Coffs Harbour Australia
Hi Aussie mum,

We have a beautiful girl Sophie who is nearly 2 and has Lamellar Ichthyosis. A different type from your little one obviously, however I felt it was important to contact you as we live in NSW Australia and think it would be a wonderful thing for her to one day meet someone of a similar age with different skin. We were lucky enough to meet another family when Sophie was just a baby at a hospital in Sydney. I think its a special thing to know we're not alone as parents and even better for our little ones to know they won't be alone either.

Cathy
_________________________
My name is Cathy and my daughter Sophie 4 years has Lamellar Ichthyosis

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#26952 - 10/04/10 09:21 PM Re: New - Looking for information on EHK [Re: sophiesmum]
Aussie Mum Offline
Member

Registered: 09/30/10
Posts: 26
Loc: Australia
Thanks Glori, any information on how it feels in wonderful. I will try the petroleum jelly, hopefully it can be another one we can alternate with.

Will try the longer bath, luckily she loves bath time with daddy.

Hi Cathy, We are in Sydney but hopefully moving to Brisbane next year. Not sure why it has taken me so long to look for other families, it take me awhile to get my head around it. She has just turned 2 and I have noticed if our hands are close she is looking at her skin and the differences. I think I am going to ned some help on the best way to explain it to her and other kids if needed.

I also don't want her to feel alone and think it would be wonderful if they a friend who relates.

Thanks,
Amy

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#26953 - 10/05/10 05:40 PM Re: New - Looking for information on EHK [Re: Aussie Mum]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Amy,
I went through the same thing trying to figure out how to introduce the topic of ichthyosis to our daughter. I have a few suggestions:

(1) Start with her scrapbook. I'm sure you have pictures of her shortly after birth. If you haven't put together a scrapbook for her yet, set aside 2 pages with pictures of her as newborn and a bit older, and then explain in very simple terms "When I was born I was very sick for xyz days. I had to sleep in the hospital for xyz weeks. This is because I was born with ichthyosis. Ichthyosis is just dry skin. Because I have dry skin, I use lots of lotion to make me feel better." Put the scrapbook in a form that is easy for your daughter to look at and play with -- I like Shutterfly.com because it is a printed book and if it gets destroyed I can always print a new one.

(2) Find a mentor family. There are many families in Australia on the Board, some that may even have the same form as your daughter. Meet up with them at least once a year if you can, exchange cards and emails, video chat, etc. This will give your daughter a friend who "looks like her" and understands what she is going through. My daughter loves her buddy Lauren, and even though they don't have the same type they both benefit from their friendship.

(3) Find an adult mentor. Look for an adult on the Board who has the same type of condition as your child. Talk to them about their experiences as a kid, and really listen to their advice. Tatiana has EHK and has been a great help to us, but she is super busy with her last year of residency and may not be around to mentor. I'm sure you'll find someone to help, maybe even someone local to you!
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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#26960 - 10/07/10 10:06 AM Re: New - Looking for information on EHK [Re: Sideshow_bob]
sophiesmum Offline
Member

Registered: 12/11/08
Posts: 24
Loc: Coffs Harbour Australia
Hi again Amy,
Sophie is doing the same thing, looking at her skin and then ours and trying to pick off the dry bits. I think there is a way to private message if you would like to swap e-mails.

Cathy
_________________________
My name is Cathy and my daughter Sophie 4 years has Lamellar Ichthyosis

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#26961 - 10/07/10 06:17 PM Re: New - Looking for information on EHK [Re: sophiesmum]
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hi Amy,
I'm the only one in my family with EHK, like your little one. My parents also experienced the learning curve that you are but without this fantastic forum.

I walk funny when I'm been still for too long and it seems that my skin "settles" into place and needs to be re-stretched. Also, the build up behind the knees makes bending them to walk less natural than swinging at the hips. I found that learning to ride a bike helped with this quite a bit.

When I'm talking to children about why I look different I usually point out the differences in curly, straight, blonde or brunette hair and then point out the differences in everyone's skin. Every person is different somehow, I'm pretty tall, have green eyes and I have EHK - but it doesn't define me.
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#26964 - 10/08/10 01:49 AM Re: New - Looking for information on EHK [Re: Sarah Helen]
Sideshow_bob Offline


Member

Registered: 02/11/09
Posts: 61
Loc: US, Midwest
Sarah Helen,
Thank you for that point! I meant to log back in and make sure to tell Amy that! One thing that has really helped our daughter is understanding that ALL people are different, and that NOBODY is perfect. One of her friends wears glasses. Another was a micro-preemie and was in the hospital for months after birth. I had to wear braces on my legs as a child (and it also helps that I have very mild IV and use lotion daily, just like her). And you know what? I had a kid approach me at soccer last week and ask where she could buy a cooling vest because she was *jealous* of my daughter. That was an awesome moment. My daughter has actually said that icthyosis is "just annoying" and that she is glad she doesn't have diabetes so she doesn't have to get shots! I think if you give your kids perspective and validate how they feel (i.e. it is totally cool to hate lotion sometimes) that they will realize everybody has something they have to deal with. Is that what you found from your experience?
_________________________
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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