very new and needing advice

Posted by: rinn2girls

very new and needing advice - 11/16/06 03:46 AM

Hello everyone,
I have an 8 year old daughter with congenital ichthyosis. I have been doing some reading on these boards and realize that I don't know the exact type of her ichthyosis. We have managed with over the counter creams and the occasional prescription cream over the years and I have sort of figured out how to manage her skin but it seems to be changing. She seems to be dryer and more scalier. I would love to have some suggestions.
We bath her Alfa Keri oil and use a dandruff shampoo 2X weekly. I use Aveeno cream immediately after the bath. Please share some ideas!
Thanks
Posted by: Zsa Zsa G

Re: very new and needing advice - 11/16/06 06:12 AM

Hi there... I have LI and as an adult with it I can sympathize with your daughter... I use a mix of Glycerine about 200mls and Skin Care Plus(brand name) Vit e Cream... they have lotions but found them too watery. Use 200 Mls of cream to 200 Mls of glycerine.. I found this awesome, plus you can adjust as you need the mix how suits her skin type and dryness. Also recently was given and over the counter creme called Dermalac from Taro Pharmaceuticles. Hope one of these helps you out.

I also live in Saskatchewan Central - Watson

You can contact me any time. SMILE

Suszanna [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Posted by: wva

Re: very new and needing advice - 11/16/06 01:03 PM

Hi. I live in Michigan and I have LI. The winters get so harsh on my skin, especially here. I also use glycerin mixed with St. Ives Collagen Elastin cream. It comes in a tall-18 ounce white container and it is the best over the counter stuff I can find for my skin. I have used the glycerin soaps and Cetaphil soaps, but I find Oil of Olay cleanser with shea butter to be the best moisturizing cleanser, and skin so soft bath oil (by Avon) is the strongest bath oil I have found. As far as shampoos I have no great suggestion. It seems like I have used everything. I'm still waiting to find a great one out there. Of course there is more stuff that others can recommend on here to help your daughter. Good luck and God bless! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Karen (wva)
p.s. I forgot to mention that I use 6 to 8 ounces of glycerin in my 18 oz moisturizers. And on cold days it doesn't hurt to apply petroleum jelly before going out in the cold.

[This message has been edited by wva (edited November 16, 2006).]
Posted by: rinn2girls

Re: very new and needing advice - 11/18/06 02:32 AM

Hello ladies,
Thank you so much for responding. And Suzanna, it is always nice to meet another Saskatchawanian.

I have another question. Should we be exfoliating on a regular basis?
thanks
Katherine
Posted by: sideshowbob

Re: very new and needing advice - 11/18/06 03:18 AM

Quote:
I have another question. Should we be exfoliating on a regular basis?
thanks
Katherine [/B]


We exfoliate our daughter daily, and I've gotten my husband in the habit of exfoliating his Eczema with great success. You have to get the dead skin off to get the hydration in. Our daughter is now two, and we've exfoliated her since she was about fourteen months old. I guess it just depends on how old she is as to how aggressively you want to exfoliate -- some people love sea sponges, others washclothes, and we love exfoliating gloves.

I melt 100% cocoa butter and add it to our daughter's creams (Aquaphor twice a day, and Cetaphil throughout the day as needed). It really just depends on the weather, and how much she needs it.

Welcome to the board.
Posted by: gryphon

Re: very new and needing advice - 11/18/06 03:46 AM

I overlooked the threads of two fellow Canucks!

Welcome Katherine and Suszanna.

I have moderate IV. Exfoliation makes a world of difference in reducing the cracking if the skin as the lotions seem to work better. Needless to say, it also removes scaling. I use salt baths when needed and a washcloth. My primary means though of exfoliating and caring for my skin is a lotion containing at least 10% Urea (and 5% lactic acid), namely Dermal Therapy Extra-Strength Body lotion.
Posted by: CShell

Re: very new and needing advice - 11/18/06 10:55 AM

From what I understand, Netherton's is sort of different in terms of exfolliation, so bear with me.

Overnight, my daughter's skin gets dry - her face and scalp are the most affected parts, and the rest of her skin is effected in patches. So maybe a 1-2 inch patch of skin on her lower leg has scaling, where the rest of her leg wouldn't. We exfolliate whatever will come off easily with a washcloth - we were advised by our dermatologist to do this, to reduce the amount of skin infections. I never rub hard on anything that won't come off easily - in my experience, it just means it's not ready to be exfolliated. We've used both sea sponges and "rough" washcloths (not rough like tree bark, but rougher than a normal towel), and they work equally as well. We sometimes use on her scalp what NICU nurses use to clean their hands with (sort of soft brushes). And we've been doing this since she was 2 months old - she's now 14 months.

But generally, I think, yes, you should be exfolliating, just with the risk of infection in mind (I know it's not just Netherton's where that's possible - anytime you have dead skin hanging around for a long period of time just builds a great place for bacteria to grow).
Posted by: aylasmom

Re: very new and needing advice - 11/18/06 03:17 PM

I am relatively new to this, as my daughter is only 6 and a half months old...however, I started exfoliating her around 2 and a half months, and it made a world of difference. Before, her skin would peel head to toe at least once a week, and now it never does a whole body peel. She gets dry patches, and that just lets me know she needs another bath...Otherwise though, I lotion her once in the morning with Aveeno lotion, and once at night with Aveeno followed by Aquaphor and jammies. I use Cetaphil on her face in place of Aveeno. I barely ever have to lotion her during the day (unless we are somewhere dry). Exfoliation made all the difference!!
Posted by: wva

Re: very new and needing advice - 11/18/06 03:36 PM

Yes exfoliating with every bath helps a lot. I remember when I was only eight, my mom buying me a big rough scrubbing loofa kind of pad so that I could scrub my skin. If you don't exfoliate the moisturizers really can't reach the skin as well. I use St. Ives apricot scrub. I have tried many others and always come back to this one because it works better for me. I even use a thin scouring pad that is meant for scrubbing pots and pans. Usually I use the scouring pad with my Oil of Olay cleanser so that it exfoliates and moisturizes at the same time. Best wishes and I hope this helps your daughter.

Karen
Posted by: rinn2girls

Re: very new and needing advice - 11/18/06 03:43 PM

Thank you everyone!

Our daughter's dry skin is fairly mild(compared to what others experience) but she does have some areas that get very itchy and scaly and I am just trying to find the best way to handle it.

We have a mineral spa in Moose Jaw and I have noticed that she does a "big peel" a day or two after going there.

I have learned so much in the past several days, thank you soo much!!
Katherine

[This message has been edited by rinn2girls (edited November 18, 2006).]