New - Looking for information on EHK

Posted by: Aussie Mum

New - Looking for information on EHK - 09/30/10 06:35 AM

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.

Posted by: Lianna

Re: New - Looking for information on EHK - 09/30/10 04:11 PM

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.
Posted by: Aussie Mum

Re: New - Looking for information on EHK - 10/01/10 11:52 AM

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.
Posted by: Glori

Re: New - Looking for information on EHK - 10/01/10 12:56 PM

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.
Posted by: sophiesmum

Re: New - Looking for information on EHK - 10/04/10 04:41 AM

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.

Posted by: Aussie Mum

Re: New - Looking for information on EHK - 10/04/10 09:21 PM

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.

Posted by: Sideshow_bob

Re: New - Looking for information on EHK - 10/05/10 05:40 PM

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 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!
Posted by: sophiesmum

Re: New - Looking for information on EHK - 10/07/10 10:06 AM

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.

Posted by: Sarah Helen

Re: New - Looking for information on EHK - 10/07/10 06:17 PM

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.
Posted by: Sideshow_bob

Re: New - Looking for information on EHK - 10/08/10 01:49 AM

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?
Posted by: Aussie Mum

Re: New - Looking for information on EHK - 10/10/10 09:26 AM

Thanks Sarah & Sideshow, I had been thinking that everyone has something different. She was actually looking through her photos albums of when she was burn, and I she saw the big bandage on her arm and said sore arm. So I started talking to her about it then.

Cathy, tried to send you a msg but it said your limit was full.

Posted by: Luckymum

Re: New - Looking for information on EHK - 10/25/10 02:22 AM

Hi Sophiesmum and Aussiemum and Courney and Brandynsmum(?)

I have two girls with nbCIE anf wouldalso love them to get to know other kids with similar skin conditions in Aus. WWe are in melb. I have noticed an increase in Aus members on this forum over the last few months and that is fantastic. We do not know any others here in Melbourne at the moment and my older daughter is 2 1/2 so I know that the day will be coming, that she will ask why she is different. So if there are any of you out there who are keen to get in touch, feel free to message me on thsi forum and we can go from there.
Posted by: Luckymum

Re: New - Looking for information on EHK - 11/01/10 02:56 AM

This is really good information. My oldest daughter is 2.5 years and we visited a neighbour last week and their son was 4.5 years and he asked me why she had strange looking hands so it started me thinking and made me feel sad because kids can be such bullies and anything different can be a focus. I hope that I can raise my daughter to understand that we are all different and to respect that and not worry about it. I hope that she will be strong enough.
Sideshow Bob - you advice sounds very good and I will try and instigate that. Even the scrap book is a good idea.
Also from the very start my husband and I have always focused on the positives i.e. there are so much worse things that nCIE so really it is all a matter of perspective.