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#16116 - 08/11/06 08:37 PM History & Questions
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
Hi, I too have a son with LI. He is now 14 months old. He was born with a colloidian membrane covering his whole body. Our doctors were really good about immediately referring us to a dermatologist in Minneapolis who in turn referred us to a company that did genetic testing for a positive diagnosis of LI. BOth My husband and I are carriers of this condition. We have some apprehension about having more children, but we will see about that when the time comes.

Anyways, Carter's colloidian took almost a month to completely come off, and now he has flaky skin covering his whole torso. His arms and legs seem to be virtually unnaffacted, which I am thankful for. We have the most problems keeping the scales off of his scalp. His ears also need to be cleaned out by an ENT regularly. We use 12% ammonium lactate lotion 2x daily, and Derma Smooth Oil on his scalp. Right now we are in need of some advice of different kinds of soaps, oils to use in his bath oil. Any other advice would be greatly appreciated!
~JEnn

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#16117 - 08/12/06 01:40 PM Re: History & Questions
Anonymous
Unregistered


Hey Jen. My name is Jamie. My daughter is Vanessa. She has what they say might be CIE. Nessa is 18 months old and was born with the collodian membrane also. Her biggest problem is her scalp . I dont have any product ideas. I feel like i have tryed everything. The problem is now her hair is getting long. Whatever we put in it , it gets greasy. I have used cetaphil, aquaphor(whick is great 4 the flakes but really greasy) and also mineral oil. The derm is now giving us desinode lotion. It is a perscription. I havent seen a difference but maybe it will work for you. We have problems with Nessa ears too. She has seen the ENT a couple times.I guess everything is trial and error. I tend to be a little sceptical because she is still young. Good luck

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#16118 - 08/12/06 03:26 PM Re: History & Questions
wva Offline
Member

Registered: 08/08/05
Posts: 401
Loc: Detroit, MI, USA
For some cetaphil soap seems to work pretty good and for others Oil of Olay cleanser for extra dry skin works good. I have LI and find that Oil of Olay liquid soap with a scrubbing pad works best for me along with sea salt to soak in the bathtub and go kind of heavy on the salt to get the full effect. As for oils...I'm not sure what is best. I have tried many and usually Avon Skin so Soft bath oil works best for me in higher quantities than most people would use. As far as over the counter moisturizers you need to find a cream that you think works best for Carter and maybe add some pure glycerin to it to help it retain the moisture longer. Creams are thicker so they usually work better. I use St Ives collagen cream. But, sometimes it is hard to find in the cream form and I add like 12 oz of cream to 6 or 8 oz of glycerin. The greasy stuff like Aquaphor can come in handy especially in the winter. But, it is a nightmare to get out of clothing and hair. P & S liquid is pretty good for the scalp but, it is sooo hard to get out of the hair and I use P & S shampoo. But, you will need a good conditioner because it dries the hair out and tangles it pretty bad. I have shampooed three times in a row after using P & S liquid and it still stays in the hair making it look greasy. All of the RX oils and soaps have not helped me near as much as the Olay soap and Skin So Soft bath oil and ocean salt in the water. If you have a jacuzzi bath that also helps the skin a lot. I don't have one. But, I use them whenever we stay places that do have them. My mom and dad were carriers for the ich too. They had four children. I'm number four and I'm the only one that has ich. My parents and I have had no regrets with them having me regardless of my ich. Good luck with Carter and God bless! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

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#16119 - 08/14/06 07:23 PM Re: History & Questions
sideshowbob Offline
Member

Registered: 10/23/05
Posts: 209
Loc: Midwest, USA
Our da is 22 months with LI (maybe CIE, who knows). Every kid is different, so really you'll just have to find what works for you. I bathe her every night using exfoliating gloves and Aquaphor baby wash. We have had lots of problems with her scalp, too; the only thing that was working was Sebulex once a week, but it smelled. Now we are using a salicylic acid shampoo twice a week, and putting Curel in her hair before bed. It has really helped the flaking. The rest of the time I just use the Aquaphor wash in her hair as shampoo.

I also use sea salts in her bath a couple of times a week; it really seems to make a difference.

As for lotion, we use Aquaphor twice a day (first thing in the morning, and right after her bath at night) and then I use Vanicream on her through the day as needed. We use Bullfrog suntan lotion, as it is the only one that doesn't dry her out. It also smells like oranges, which I like.
_________________________
4 year old daughter with CIE

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#16120 - 10/20/06 01:56 AM Re: History & Questions
EMY Offline
Junior Member

Registered: 10/19/06
Posts: 1
Loc: PA, USA
To remove scales from the scalp I use PS liquid made by baker cummins. With consistance use it works great, but the smell is pretty bad.

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