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#16277 - 12/12/07 12:10 AM Oral Supplements
jasonp Offline
Junior Member

Registered: 12/11/07
Posts: 1
Loc: Elkhart, IN. USA
My son was born with Lamellar Ichthyosis 2 years ago. My wife and I would like to know if there are any good oral supplements and if anybody has tried them, what kind of results have you seen?

#16278 - 12/12/07 03:35 AM Re: Oral Supplements
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Are you looking for nutritional supplements to maintain growth and body weight or something to cure the ichthyosis?

For the former, we add Carnation Instant Breakfast powder to the morning milk to increase the calorie intake. We use a lot of eggs, milk, butter, peanut butter, nuts and any other source of protein we can.

For the latter, I don't know of anything that helps.
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"

#16279 - 12/12/07 02:23 PM Re: Oral Supplements
Beth Engerman Offline

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
Hello fellow Hoosier!! My name is Beth and I have LI. I currently live in Indy, but I am originally from 30 miles north of Ft. Wayne. My parents live in Columbia City.

Some fish oils are good to take. I can't remember the name of the one that I take but I think they are all pretty much the same.

Anyway if you ever want to chat or get together send me an email.

"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

[This message has been edited by Beth Engerman (edited December 12, 2007).]
"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

#16280 - 12/26/07 12:44 PM Re: Oral Supplements
Lisa O Offline

Registered: 07/25/07
Posts: 10
Loc: Under the Stars in Northern IN...
Wow! I can't believe there is anyone in my area with the same condition. We live in Bristol and my Grandaughter has CIE and just turned 1 in November. My husband and I take care of her and have gaurdianship. We are continuing to give her next step formula and also oral vitamins with iron. I just want to make sure she is getting all the nutrients she needs. I have read that she will use extra calories because of the faster production of skin formation. I hope that answers our question. Maybe we will happen to run in to each other sometime. Good luck!
Rayna born 11-16-06 CIE with collodian membrane.


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