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#10514 - 05/31/05 09:27 PM XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
Hi -

First of all, I had read that XLI doesn't usually affect the face so maybe the dry skin my newborn has on his face is just normal newborn dry skin. But I just had a quick question - do you guys use Aquaphor on the face as well or is there a better lotion for use on the face?

Thanks,

Lisa

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#10515 - 05/31/05 10:34 PM Re: XLI and dry face
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Hi...
My name is also Lisa and my 3 year old son and 1 year old daughter both have Lamellar. We use both Aquaphor and Curel Ultra Healing lotion on their entire body including their face. I think that the Curel does a great job and then I like to put the Aquaphor on top to hold the moisture in. We have used both products on them since birth and have not had any problems with using them on their face. Sometimes we use them together and sometimes we use one or the other.
Lisa
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#10516 - 06/01/05 05:22 AM Re: XLI and dry face
ShaunaJ Offline
Member

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
My daughter was born with Lamellar Ich and we use Eucerin Plus on her, face and all. It seems to work very well also. We used aquaphor one her when she was younger too, but now she says it bothers her and so we just lotion her with Eucerin 3 times a day or more.

Shauna
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Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

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#10517 - 06/01/05 08:15 PM Re: XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
I guess I should ask this - what is the experience of other mothers with XLI sons regarding dry skin on the face? Is this normal? Is it the XLI or just normal newborn dry skin? I don't remember my first son having such dry skin - at least on the face.

I find aquaphor so greasy! I don't like heavy moisturizers so putting that greasy stuff on the baby's face seems yucky!

Lisa

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#10518 - 06/02/05 04:09 AM Re: XLI and dry face
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
My son (has XLI) started using aquaphor at birth. We would lather it on his face as well as the rest of his body. (Then I would give kisses to keep my lips from getting chapped) [img]http://www.ichthyosis.com/ubb/smile.gif[/img] The texture never bothered him and when he was old enough to express his opinion, he thought regular lotion was "icky feeling" and always opted for the aquaphor. The only thing I warn you is it seems to act like oil when it comes to the sun, so depending on your activities you might want to find a moisturizing sun screen. I found Neutrogena Ultra Soft Hyrdrating Sunblock doesn't sting him so much as some others might.

We're actually at a stage in his life right now that I don't think aquaphor is very much effective due to his school and playground exposure. But he still rubs it on his face before bed and I probably won't stop that. The one thing you have to decide is if other creams and lotions sting? It's hard to tell for babys since they can't communicate. And no matter how fragrance free/hypo-allergic blah blah blah the lotion says, it still can sting if the skin is sensitive enough. And the face has always been the worse for my son.

Hope that helps. Have any more questions let me know. [img]http://www.ichthyosis.com/ubb/wink.gif[/img]
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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#10519 - 06/02/05 04:21 AM Re: XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
Hi Charmed -

So has your son's face always been dry? I swear I had seen somewhere that XLI doesn't usually affect the face.

Maybe I have different aquaphor? Mine seems almost like vaseline - it's really thick and greasy. Is there a different kind that's more like a lotion?

Thanks!

Lisa

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#10520 - 06/02/05 04:50 PM Re: XLI and dry face
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Hi, lisat. I have been reading many of your posts (I check this board regularly). Congrats on your new one! I have 2 boys with rxli, both of them have suffered to varying degrees with dry skin on the face. My youngest, who is now 18months old, had it the worst. He was very very red when born and then just peeled and peeled for a few weeks - his skin just got really really dry and cracked all over his body, his face was just as bad as the rest of his body, he just had large flakes peeling off regularly (I would sit and peel it away every so often.) I found that Cetaphil lotion worked wonderfully for him, at first I didn't lotion him, but then when I started using Cetaphil, it was really really good at keeping him moist, and it really helped loosen that first layer of peeling he had going on. His face hasn't been as bad since, but there are still areas of flaking and dryness pretty regularly. His "classic" areas are the worst, of course. I guess you could just experiment with lotions, as everyone else has, it is true that one may work for someone, but not another. My boys both use different lotions, Cetaphil works beautifully for my youngest, I use Eucerin Calming Creme on my older boy. I never used Aquaphor because I hate the greasiness, and it wears off so fast. I use to use vasaline on my older boy, but it didn't help. Lotions with glycerin seem to work wonderfully because they keep moist longer. I liked the Cetaphil for baby because it's real light, yet powerful. If I lotion morning and night, his skin stays soft, even though it's scaly. Okay, enough rambling, hope this helps, congrats, and enjoy!
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#10521 - 06/02/05 05:53 PM Re: XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
Hi LauraAnn -

Do you know if Cetaphil is okay to put on a newborn? Everyone just kept telling me Aquaphor, Aquaphor, Aquaphor. . . . .

Thanks so much for the info.

Lisa

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#10522 - 06/02/05 11:21 PM Re: XLI and dry face
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
As far as I know (i'm no expert!), it's as safe (the Cetaphil) or more safe than regular baby lotion - it doesn't have all of the fragrances and such - just the basic ingredients, it's made for the most sensitive of skin, it never seemed to bother my boy. Most of the time doctors seem to say not to put ANY lotion on a newborn, I'm not sure the reasoning, but my pediatrician told me not to use anything for my boy, but then when he came in for a check up and she saw how he was cracking, and I explained to her that he probably was rxli, she said DEFINITELY lotion him! That was at 2 weeks. I haven't heard anything negative from our derm or pediatrician about using the Cetaphil - they always ask what I use on the kids' skin. I also use the Cetaphil liquid cleanser because it is extremely mild and lotion like, with no fragrance, not soapy, and it is recommended for baby skin. It also contributes to keeping the skin soft.
ANYWAY......
I wish you success, just keep trying things, I'm sure you will find something that will help. You already know this, but this BB is the place to be! My boys' derm told me this is our best resource. She's not kidding.
Take care!
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#10523 - 06/03/05 02:32 AM Re: XLI and dry face
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
I guess because the hospital started with aquaphor on Tre I never experimented much with other lotions. It just worked the best. His face is dry though. It's really a light flaky-ness to his whole face. A lot of people will base his whole skin condition solely on how his face looks. Which is ridiculous since that's the least affected. A lot of the times he'll forget his ears for a couple of days and I'll notice some skin breaking behind and a little bit of blood. So I have to remind him, so I guess if he didn't use something on his face, he could have those problems all over.

And we are using the same aquaphor. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] It's just like vaseline, but doesn't leave that yellow tint behind. It soaks up into his face pretty fast. His hands and feet we usually put lotion socks and gloves on after so the aquaphor doesn't moisturize my carpet and couches.

When he was a newborn, he would over heat during the New England summer humidity (we used to live in CT). So we would give him a cool bath, put aquaphor on, wait an hour and put him back in the bath and repeat process. Sometimes just letting him play with his feet in some water would cool him off enough, or we would stick him in the only room with air conditioning. But it was aquaphor all the way.

Now he's starting to see different rashes and more severe drying and cracking, I think due to the more sun and playground exposure. Aquaphor once at night doesn't seem to be cutting it, and it's not like he can jump in the bath during the day, so I'm out experimenting again. I think I'll still do Aquaphor on the "bad" parts (knees, feet & hands) but try another lotion maybe 2-3 times a day on legs, arms and face. I'll keep you all updated if I find something else. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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