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#23677 - 01/14/09 07:44 PM Epiceram
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Has anybody here ever heard or had any experience with a new topical emulsion called Epiceram? It was prescribed to my 14 month old son who has Netherton Syndrome by his UCLA dermatologists. They said it's fairly new. It actually took CVS 3 days to have it available. I'm just concerned about unknown side-effects if this is an experimental drug. I started applying it on him today.

Thanks!

Karen
nethertonsyndrome.blogspot.com


Edited by westhillsmom (01/14/09 07:45 PM)
_________________________
Nate, 15 months. Diagnosed with Netherton Syndrome.

www.nethertonsyndrome.blogspot.com

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#23714 - 01/19/09 01:09 AM Re: Epiceram [Re: westhillsmom]
NYToyota Offline
Member

Registered: 01/20/08
Posts: 9
Loc: Roseland, NJ USA
We just got it too for our 18 month old and have just begun using it as well. Have you noticed any difference yet?

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#23818 - 02/08/09 07:44 PM Re: Epiceram [Re: NYToyota]
westhillsmom Offline
Member

Registered: 06/23/08
Posts: 15
Loc: los angeles, CA
Hi,

Unfortunately, we had to stop using it for a while because he's been breaking out badly all winter and Epiceram stings, he just screams his lungs out when we use it on him.

How about your baby? Any difference/results?

Thanks,
Karen
_________________________
Nate, 15 months. Diagnosed with Netherton Syndrome.

www.nethertonsyndrome.blogspot.com

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#23979 - 03/16/09 01:56 AM Re: Epiceram [Re: westhillsmom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
We just recently saw a new derm who recommended this. They don't have it here in Australia but I'd like to order some. Do you know if anywhere online sells it?
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23985 - 03/16/09 01:32 PM Re: Epiceram [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
What are the ingredients?

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#23996 - 03/17/09 12:20 AM Re: Epiceram [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I'm not completely sure but she did say that it isn't an acid based cream. Apparently it is made by the dermatologist that found the TGM1 gene and the ingredients try to replace one of the things that TGM1 deficient LI patients lack..Sorry I know that isn't much help! Maybe someone else knows more?
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#23998 - 03/17/09 01:02 PM Re: Epiceram [Re: brandynsmum]
Ivy's Mummy Offline
Member

Registered: 10/31/08
Posts: 97
Loc: England
I found this on the EpiCerm website.

Ingredients
Capric Acid, Cholesterol, Citric Acid, Conjugated Linoleic Acid, Dimethicone, Disodium EDTA, E. Cerifera (Candelilla) Wax, Food Starch Modified Corn Syrup Solids, Glycerin, Glyceryl Stearate, Hydroxypropyl Bispalmitamide MEA (Ceramide), Palmitic Acid, PEG-100 Stearate, Petrolatum, Phenoxyethanol, Potassium Hydroxide, Purified Water, Sorbic Acid, Squalane, Xanthan Gum.

I hope this helps.

x
_________________________
Emma

4 year old girl with Lamellar Ichthyosis

Baby girl unaffected

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#24005 - 03/18/09 05:52 AM Re: Epiceram [Re: Ivy's Mummy]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Thanks Emma! I heard back from the derm today who said that we could order it online however it says that you need a prescription in the US anyway. I've e-mail them to see what they say. The derm said that it's very expensive though..we'll try it out nevertheless and if it works that would be great smile I'll let you know what I find out..
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#24006 - 03/18/09 11:42 AM Re: Epiceram [Re: brandynsmum]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
I'm by no means an expert on cream ingredients but from what I can gather, the components don't include any acids that could particularly aid exfoliation etc. It seems to be made up of moisturising stuff (fatty acids mainly that can aid inflammation response to infections post injury).

If there was something in there that would help slow the skin build up or enhance exfoliation it may be worthwhile persevering (perhaps dilute with your regular moisturiser) a while as the stinging can subside after a week or so, but if the end result isn't going to make any improvements then I would ask is it worth it?

Let us know how you get on though!

J x

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#24013 - 03/19/09 01:32 AM Re: Epiceram [Re: BritMum]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
Very true, Britmum and I agree. I figure you must try everything once though smile The derm. that recommended it said that she has another patient with Harlequin and the mum absolutely loved the stuff but it was too expensive for her to buy. Very unfair and unfortunate. Maybe it's just a wonderful moisturiser that helps the appearance of the skin.

No response from the pharmaceutical co. yet. I just tried calling and couldn't get through. I'll keep you updated!
_________________________
My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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