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#6278 - 11/17/06 09:27 PM Treatment Options
Xander Offline
Member

Registered: 11/17/06
Posts: 5
Loc: South Bend, IN, USA
Hello everyone. This is my first post to this site. I was looking for some info. on a few treatment options that I have discovered while researching. Well first and formost my wife and I were blessed with a beautiful little girl almost a year ago now. She was a collodian baby and has since been diagnosed with LI. We have tried dozens of OTC treatments and none seam to work better than the other. I have read a few studies regarding treatment with 10% N-acetylcysteine in a water silicone emulsion. Does anyone have any personal experience with this treatment? I have also discovered a study using Remedy skin care products (Skin Repair Lotion, Remedy Nutrashield) from Medline treating an individual with amazing results. Does anyone have any personal experience using these products?

Take Care

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#6279 - 11/18/06 04:50 PM Re: Treatment Options
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
Welcome to the board and congrats on your daughter! I do not have information on LI, my boys have XLI (different form of ichthyosis), but I wanted to give you information about FIRST. Try contacting them through the web at www.scalyskin.org They would have the most accurate information, and help you get in touch with families with children that also have LI.
Welcome!

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#6280 - 11/19/06 02:16 AM Re: Treatment Options
jenngist Offline
Member

Registered: 08/11/06
Posts: 99
Loc: Northern MN
I have not tried either. We had the same situation with my son who has LI. The best thing that we have used it Ammonium lactate 12% lotion. His skin is not broken though, if your daughters skin is craked, it would really sting a lot so I wouldn't use that.

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#6281 - 11/19/06 03:43 PM Re: Treatment Options
Xander Offline
Member

Registered: 11/17/06
Posts: 5
Loc: South Bend, IN, USA
Thank you for the help. Our daughters skin doesn't crack either. Here are a couple of the case studies I spoke of earlier. Give them a read and hopefully they can help someone.
http://www.o-wm.com/article/5538
http://www.pjonline.com/Editorial/19991204/clinical/acetylcysteine.html

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#6282 - 11/20/06 05:00 PM Re: Treatment Options
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
Hi, I'm Beth. I am originally for Kendallville, IN about 30 min north of fort wayne and I have LI. I now live in Indianapolis, but my whole family still lives in the fort wayne area. I see an amazing doctor in indianapolis and Riley who specializes in gentic skin disorder and know a great deal about ichthyosis. If you ever want to get together I would be more than glad to meet with you just send me an email. Glad to see you found the board!!

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

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#6283 - 11/22/06 05:21 AM Re: Treatment Options
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi and congrats on your baby. I am from South Bend, but now live in Illinois, my whole family still lives in South Bend tho. I will probley be there around x-mas time. Our 1yr old son also had LI. maybe we could meet sometime.

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#6284 - 11/22/06 05:24 AM Re: Treatment Options
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
My email address is algonquinfamily1@yahoo.com and I also use shandra_galvan@sbcglobal.net Send me an email and I will email you back with my number etc. I will give you my familys name, you might know them. Very large family and have lived in SB all their lives.

Take Care

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#6285 - 11/25/06 01:26 AM Re: Treatment Options
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Quote:
Originally posted by Xander:
Hello everyone. I have read a few studies regarding treatment with 10% N-acetylcysteine in a water silicone emulsion. Does anyone have any personal experience with this treatment?



Hello Xander,

Your post brought up an interesting approach to treatment that I have never considered myself. That is the regular use of antioxidants *topically* to treat ich. I eat plenty of foods rich in antioxidants and take several supplements. I find my skin condition to be better than before, but I can't say whether that is just from better nutrition overall or specifically from the a-o's. If you do try either the 10% N-A treatment or the Remedy products on your daughter, please post about back about the results. I, for one, would be very interested to know about it.

As for your question on the 10% N-A emulsion, there has been a previous post about it. If you haven't already seen it I've linked it below.

http://www.ichthyosis.com/ubb/Forum1/HTML/000181.html

For others who may be interested, I've copied a synopsis of the 1999 Spanish case study.

Antioxidant emulsion cures scaly skin (ichthyosis)

PAMPLONA, SPAIN. Ichthyosis is a condition in which the skin is dry, rough, and scaly. It is caused by a fault in the control mechanism which governs the deposition of keratin (a fibrous protein) in the skin and is often present at birth (congenital). Ichthyosis can be ameliorated somewhat by the use of emollient creams, bath oils and ointments, but the condition is usually an ongoing problem. Medical doctors at the University Clinic of Navarra, School of Medicine now report the successful treatment of ichthyosis with a water-in-oil (silicone) emulsion containing 10 per cent of N-acetylcysteine (NAC). Their patient, a 33- year-old woman, had large patches of dark, scaly skin on her limbs, trunk, scalp, and neck and had been treated with conventional therapies without success. She was instructed to apply the NAC emulsion to one of her forearms and a placebo emulsion (without the NAC) to the other forearm twice a day. Five weeks later the skin on the arm treated with the NAC emulsion was essentially free of scales and roughness while no change was observed on the arm which had received the placebo treatment. The researchers conclude that a NAC-containing water-in-silicone emulsion may be useful in the treatment of hyperproliferative skin disorders and point out that NAC is hypoallergenic, non-toxic, and rarely has any side effects.
Redondo, Pedro and Bauza, Ana. Topical N-acetylcysteine for lamellar ichthyosis. The Lancet, Vol. 354, November 27, 1999, p. 1880 (research letter)

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#6286 - 11/25/06 01:53 AM Re: Treatment Options
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
BTW I do not approve of the use of the word "cure" in the synopsis I copied in my last post.

Please remember I *copied* it and those are not my words. I would say that it is a TREATMENT, as anything short of gene therapy should be described.

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