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#15079 - 01/30/08 05:47 PM Skin
Elizas mom08 Offline
Member

Registered: 01/18/08
Posts: 55
Loc: Heartwell Nebraska US
I don't know if this is a stupid question but of all the pictures I have seen of your beautiful children they don't look like they have ichthyosis does all the loose flakey skin kind of get milder when they get bigger because Eliza is so flakey. Will hers get milder? If this is a stupid question please tell me because I don't want people to think I don't know anything.

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mom of Eliza possible C.I.E. 4-9-07
Brady 9-10-01
Hunter 7-11-05
_________________________
Lacy,Elizas mom possible C.I.E. 4-9-07
Brady 9-10-01
Hunter 7-11-05

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#15080 - 01/30/08 06:08 PM Re: Skin
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
Hey Eliza's Mom, you can see some pics of Myles on photobucket.
http://s244.photobucket.com/albums/gg5/tmpol/

You can tell he has LI.
From what i am told, it does get better with age. Myles was born May 22nd 2007. Hope this helps.
All the best
Tara

------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#15081 - 01/30/08 06:14 PM Re: Skin
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
There are no stupid questions in my opinion. My kids were both very flaky in the face during their first year and I think it had a lot to do with rubbing their little faces all over everyone and everything during snuggle time and nap time. Cade's skin was a little different from infant to age 1 or so because it took us a while to figure out what worked for him. It takes a while to establish a good skin care routine and figure out what works and what doesn't. As they get older, it's easier to exfoliate them in the tub too. By the time Leah was born, Cade was two years old and we had finally gotten a good routine down so Leah's first year was a lot better than Cades was. We knew what we were doing by the time she came along. Don't sweat it...you will figure it all out as you go!
Lisa
_________________________

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#15082 - 01/30/08 07:39 PM Re: Skin
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Julia's skin is *definitely* flaky. Not even just flaky, but red. It's mostly her scalp and her face. I think pictures don't really represent how she looks in real life sometimes, because her skin is either really red or really not red in pictures lol

This is probably the closest representation of her skin in a picture, because the flash was off:
[img]http://i90.photobucket.com/albums/k277/CShellAK/6.jpg[/img]
_________________________
Courtney
Mom to Julia

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#15083 - 01/31/08 02:30 AM Re: Skin
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
First of all, cshell, I can't believe how big julia has gotten!! I haven't seen pics of her in awhile!!

Anyways the reason that I am writing this is because I wanted to let TMPOL know that my son's head gets that scaly also, but if we use amlactin cream on it 2x a day it is almost completely gone. I am going to try and post some pics to show you. Also, I have been using that creme since he was born in 2005 and love it. It doesn't smell like some of the others. it is behind the counter at walmard but non presciption and costs maybe $11.

Just thought that I'd share

Jenn

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#15084 - 01/31/08 04:06 AM Re: Skin
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
[img]http://i124.photobucket.com/albums/p25/frantolu/IMG_0302.jpg[/img]

Not a silly question at all - I ask it regularly too, don't I Courtney!!!! This is a picture of Lucia(25months last Nov)in the morning, before her bath; the skin underneath is rosy red which is her daytime colour and then the flaking starts again around 5pm. This happens mainly on her face and scalp only these days, while up to 18months this flaking was all over. Despite the daily battle to remove it(she scratches badly otherwise), as you can see she is all smiles! For us its finding the most effective oil or ointment that can soften the top layer up prior to the bath so that it can be wiped off without any fuss - let us know if you find a winner!

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#15085 - 01/31/08 06:23 AM Re: Skin
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
My kids don't flake at all. The skin just gets thicker and drier until it cracks or until they start scratching. They do get the scalp buildup, but not enough to rearrange the hairstyle like some of the kids I have seen.

I took these today. You can see that they have scratches where their skin is delicate, but no visible flakes unless you happen to look inside their ear folds.

[img]http://i5.photobucket.com/albums/y170/12hearsay12/DSCN6647.jpg[/img]
[img]http://i5.photobucket.com/albums/y170/12hearsay12/DSCN6648.jpg[/img]
_________________________
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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#15086 - 01/31/08 03:22 PM Re: Skin
LittleLove Offline
Member

Registered: 01/08/08
Posts: 36
Loc: West Caldwell, NJ USA
ElizasMom, thank you for asking this question, as I wondered the same thing! Portia looks great on her face and trunk, but her arms/hands, legs and feet are so thick! I didn't know if this was just her. Seeing all of these beautiful children gives me hope that one day Portia, too, will look just as good. If we could only find the right mix for her and get the thick skin off! (I would post a pic, but I don't know how)
_________________________
-----------------------------------
Jolie
Mommy to Portia Lotus, 7.16.07
and Myles Dillon, 10.16.10
both with NBCIE
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#15087 - 01/31/08 04:58 PM Re: Skin
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
You need to go to photobucket and make an account. Upload some pictures there (push the "browse" button, find the picture, then push "upload"). Once you have pictures on there, you can post them here by clicking the one on the bottom [IMG)http://photobucket.com/picturename

Then open up a reply box here and paste it in.
_________________________
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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#15088 - 01/31/08 07:24 PM Re: Skin
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hi All,
I always like to say that pictures flatter Evan(2 1/2 years old - palmar plantar EHK). In person, he has a lot of skin build up on his neck, elbows, armpits, knees and groin. His hands and feet are very scaly. We do not actively exfoliate. His only exfoliation is with soap & water in the tub. We use bleach in his daily bath water. We only wash his hair a few times a week, but we use a leave in conditioner everyday. Aquaphor is our weapon of choice, along with any kind of regular lotion. He looks the worst before his bath and the best after it. Great question & thread!
Best Wishes,
Kimberly

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#15089 - 01/31/08 08:07 PM Re: Skin
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
I just thought it was important to point out that each type of Ichthyosis will require different care and will appear differently. The original poster has a child with CIE and the responses on this thread include a variety of types of Ichthyosis.

I do feel that it is important for everyone to respond to a thread being that there are lurkers and new parents that join all of the time. It's helpful to those who didn't ask the question to be able to read the answers of others who have experience with the same type that they are dealing with.

I do however feel that often times in reply's, there are comparisons to different types of Ichthyosis which can be frustrating as many of the different types are very different from each other.

Just wanted to point that out.
Lisa
_________________________

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#15090 - 02/01/08 01:07 AM Re: Skin
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
I completly agree Lisa, that is why I sent the link so that Eliza's mom would be able to compare herself. Myles has lamellar and presents very differently from every other case i have seen, albeit, I have not seen a lot of pics of kids with LI and more of children affected with CIE.

Would love to see more pics of children with LI for my own comparison purposes.

I love this board....it is so very helpful.
Tara

------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#15091 - 02/01/08 03:04 AM Re: Skin
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
TMPOL--
my son also has LI. I will try and get some pics posted tomorrow

Jenn

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#15092 - 02/01/08 04:46 AM Re: Skin
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
As a side note, Francesca - Lucia has the MOST beautiful green eyes i have ever seen.....

------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#15093 - 02/01/08 05:35 PM Re: Skin
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
I finally got those pics that I had been talking about. The first one is Carter from this summer. we had done a "trial" at home to see if he really needed that Amlactin Creme. This pic was taken after not using it for about 10 days.
[img]http://i100.photobucket.com/albums/m25/JennGist/100_0805.jpg[/img]

This is a pic from this morning. As you can see he still has darker skin on his forhead but nothing like without the creme. [img]http://i100.photobucket.com/albums/m25/JennGist/100_1960.jpg[/img]

I just thought that I would share=)

Jenn

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#15094 - 02/02/08 01:40 AM Re: Skin
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
Hey Jenn,
Thanks for sharing. The second pic Carter looks great. Is that after you were using the cream? Myles scales on his head look almost the same.

Your other son is not affected?

Their eyes are AWESOME!!

Cheers
Tara

------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#15095 - 02/02/08 07:25 PM Re: Skin
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
The older boy is my stepspon and he is unaffected. He has never been tested for carrier status either. My son Carter is affected with LI and my daughter Ava is a carrier but unaffected. =) Thanks for the compliment about thier eyes. I think that is my favorite feature of all of the kids.

Yes, the second pic is after the cream. We use it every day in the morning and before bed. we use aquaphor as needed on his scalp. WE also use Jergen's Ultra healing on top of the amlactin cream. The Amlactin doesn't provide as much moisture as the Jergens but without it the scales build up too much.

Does Myles have a lot of troubles with his scalp too?? That is what we have the most difficulty with Carter.

Jenn

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#15096 - 02/04/08 01:33 AM Re: Skin
kiyasmum Offline
Member

Registered: 01/23/08
Posts: 7
Loc: australia
hello there,does anyone know the % of AHA's tat is in lotions, what is safe, i have found a site to buy aha's and would love to start making lotions and soaps for my children ten i would know exactly wat is in them and know they are safe as you know some creams have harsh side effects such as photosenitivity ect. i have found natural product but is expensive and i have two kids with ich (iv i think). email me if u want to know the site to buy aha's, take care
_________________________
christine

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#15097 - 02/04/08 04:00 PM Re: Skin
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
Hello,
I wanted to share a pic of myself as a child. I think I was about 5 or 6 years old so I was not taking any specific treatment at the time - just lots of cream and TLC. My original diagnoses was bulous CIE but now I know that it's EHK. I don't flake too much but have a hard thick skin that tears off very easily.

Here is my first convertable car [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

[img]http://i189.photobucket.com/albums/z229/skimmelman/Sarahintoycar.jpg[/img]

oops - sorry the pic is so big! (I still get that evil grin behind the wheel).
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Sarah
35 with EHK

[This message has been edited by Sarah Helen (edited February 04, 2008).]

[This message has been edited by Sarah Helen (edited February 04, 2008).]
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#15098 - 02/05/08 01:27 AM Re: Skin
TMPOL_dup1 Offline
Member

Registered: 07/12/07
Posts: 138
Loc: Collingwood, Ontario, Canada
Sweet Ride Sarah,
You were a really cutie as a child.
Thank you for sharing!
Tara



------------------
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis
_________________________
Myles' Mom
Myles born a collodion baby
Lamellar Ichthyosis

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#15099 - 02/06/08 09:22 PM Re: Skin
momof3 Offline
Member

Registered: 04/12/07
Posts: 209
Loc: SJ, CA USA
Hi,

Dane is now three and we still don't know what form he has. The specialists are now thinking he may have his own mutation (his KID results should be in in @2 weeks...it took awhile for UCSF to send out the sample...but with that said, he'd be the first person diagnosed with it without hearing impairment). Dane is more flakey than scaly, but remains extremely dry unless we put lots of aquaphor/vaseline or cream on him. Here's a few pictures.

<IMG SRC=\"http://i221.photobucket.com/albums/dd231/snnphelps/th_Hands003.jpg\">
<IMG SRC=\"http://i221.photobuc...jpg\">
<IMG SRC=\"http://i221.photobuc...jpg\">

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