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#16145 - 09/06/06 10:43 PM Questions
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Any help anyone can give would be appreciated, and BeepBeep especially... I read some of your recent posts, and have a couple of questions...

What is transdermal water loss? What are signs of it? How was it diagnosed, and is it a common problem with CIE (or lamellar) ? I am wondering if it's something I should be worried about for Ayla.

Also, Ayla's skin doesn't tear easily or ever have open sores...I don't have to limit her clothes to 100% cotton, and diapers don't bother her at all...is this common for CIE (or lamellar)... ? Her derm has given her an unofficial CIE diagnosis, but I am wondering if it's wrong as she has never experienced those things that Ethan has...

I would appreciate everyones input-

Thanks everyone for help...I just want to make sure I am on the right track.. Ayla's only 4 months old, so I am still new to this.

Dawnn

[img]http://i93.photobucket.com/albums/l65/fire28911/000_0321.jpg[/img]

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#16146 - 09/07/06 02:52 AM Re: Questions
marcsmom_dup1 Offline

Member

Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Hi Dawn,

Everyone's skin varies, even if the diagnosis is the same. So, here is my story.

Marc has lamellar and he is now 9 years old.

I only used 100% cotton on him during the first year of his life. Since then, he has worn all types of fabrics and we have never had a problem. His skin does not, and it never has, torn due to clothing or the types of diapers he has worn. He has also never had any kind of open sores.

As far as the transdermal water loss....none here. Marc drinks a lot of water, urinates fequently, and does not get cold in the winter (he RARELY gets cold! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] )

Ayla looks great! I am no expert, but from looking at her photos, I would say that she has CIE. Most of the people I have met at the conferences that I have attended (4 of them so far!! [img]http://www.ichthyosis.com/ubb/smile.gif[/img] ) who have CIE, look like your daughter...reddish skin and not the thick, scales like lamellar.

So, I hope that helps you. Keep up whatever you are doing and I am sure she will be fine. Just because others experience different "things" with a particular type of ichthyosis, doesn't necessarily mean that your daughter will, too.

Just enjoy her-let her be a kid and you be a "regular" mom, not worrying about "skin stuff"- because before you know it, she will be 9 years old, in the 4th grade and not as willing to give you kisses anymore. (Do you think I am speaking from experience!! LOL)

Take care!
Denise [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#16147 - 09/07/06 03:32 AM Re: Questions
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
Hi Dawnn...
We do not have a problem with the transdermal water loss. We have a similar experience like Denise mentioned with Marc...Cade and Leah rarely get cold. Our only temperature issue is overheating. We keep the house set at 65 degrees in the winter and we have never had an issue with the kids getting cold. We really struggle with visiting people in the winter because everyone makes their house SO warm and dry. I do my best to have people visit us in our home so that Cade and Leah don't have to sit in a hot dry house.

We have never looked for 100% cotton clothes. Cade and Leah have never had any problems with any type of fabric or diapers. I dress them in comfortable clothes and Leah wears a lot of blue jeans and jean shorts. I buy whatever is cute and feels nice LOL!

Cade and Leah have had "cracks" in their skin but only under their toes, between their toes, between their fingers, and behind their ears. That hasn't happened in a very long time and has only really happened when they were too moist and not getting enough air to their skin OR if they were sick and doing a full body peel. Anyway...nothing huge...just little cracks.

BTW...LOVE Ayla's four month picture. Too cute! It reminds me of when our kids were little and used to make what we call "the pie face". Oh I love little baby faces...LOL!
Take Care!
Lisa
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#16148 - 09/07/06 01:40 PM Re: Questions
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Thanks guys- Ayla is sporting her first pair of jeans in this photo! Thanks for all the info... I was just worried that I was completely missing something I should have been more concerned about...but Ayla actually eats a little less than what they told us she would at this point, and has plenty of wet diapers, and clearly no growth issues. (LOL!! I love chubby babies!)

Erin My current routine is pretty minimal...

Bathtime

I give Ayla a bath 2-3 times per week (pending any diaper blow outs!!) Any more just dries her out. I exfoliate her with my fingertips after letting her soak for about 10 minutes. I then wash her with Olay Body Wash with Shea Butter and a loofah. After every bath I cover her in Aquaphor (except her neck and diaper area)-

I know exfoliation has been a recent topic of debate...but I really think it has made all the difference! Her skin is soooooooo much better (lilke night and day) since I started.

Scalp/Hair

I have been washing her hair with Johnsons or T-sal depending on if I can see a lot of buildup (but I want to try Burts Feelin Flaky) and condition with Netrogena Intense moisture. I put Curel on her scalp at night, and if we aren't going anywhere special I don't wash her hair everyday (I know that will change in the future).

Body

I use Aquaphor at night before bed everywhere except for her neck and diaper area since Ayla is sleeping through the night now. I lotion her head to toe first thing in the morning (Aveeno on her body, and Curel on her face), and only where I think she needs it throughout the day when I change her diaper. I do her hands and feet every time since they tend to be the dryest. I only lotion her neck once per day since it tends to be moist under her little double chin from all the dribbles LOL! I also do not lotion her diaper area EVER, unless I absolutely have to. We were having a lot of really raw, dry, peely days in that area, but since i have started exfoliating I don't even need lotion there (I am sure that will change when she potty trains...I would think the diapers keep her skin moist.) I use pampers diapers and sensitive wipes, and dress her in whatever I like-

That's about it- I haven't been through a winter yet though, so I am a little worried...

Thanks again ladies- Your help and advice is, as always, very appreciated!

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#16149 - 09/09/06 12:05 PM Re: Questions
Chrissie Offline
Member

Registered: 07/20/06
Posts: 122
Loc: The Gap, Brisbane, Qld Austral...
Oh..how beautiful! May i please send a net hug and pinch the beautiful cheeks [img]http://www.ichthyosis.com/ubb/smile.gif[/img]. Oh so so cute. Warm hugs XX

Hugs
Chris

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#16150 - 09/10/06 12:19 AM Re: Questions
aylasmom Offline
Member

Registered: 05/29/06
Posts: 215
Loc: Waterford ,MI
Ayla says thanks everyone for the hugs!

Erin- I decided not to work right away... I got a severence from my old job, so I went back to school. I need a couple of classes, and then nursing school... I only go two days a week right now, and my mom is watching Ayla. Although money is tight, I won't have to do full time until she's at least one- Online teaching would be great!

Also, I happened to think... If Ethan is allergic to the diapers...could it be a latex allergy? I don't know if the diapers have latex or not... but it might make a difference if you're using latex gloves...just a thought...might be totally off track...

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