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#20320 - 04/21/05 04:37 AM Lamellar, info please!
Lee Offline
Member

Registered: 04/20/05
Posts: 7
Loc: Sydney, Australia
Firsly, i have been reading this site for a few weeks and think its great!
I have just recently found out that my three month old daughter has Lamellar Ichtyosis. The dermatologists we have been seeing have been treating her like a guinea pig and we feel as though we have no info. Our main questions at the moment Do the symptoms stay the same as they present or do they get worse? Does diet play a role? (we've been told to elimnate preservatives)The only treatment they have told us to try is eucerin, is there anything else you can use on babies? Does it ever get better. Sorry to ask so many Ques (a bit cheeky i know), Specially for my first time o but any info and help would be greatly appreciated.

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#20321 - 04/21/05 01:16 PM Re: Lamellar, info please!
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I don't know a lot about lamellar, but I know that there is a lot of good information on the LI board, plus some on the general discussion board. I hope you get a chance to read through it.

Many dermatologists know utterly nothing about ichthyosis, as it is really rare. Our best experiences have been with dermatologists affiliated with medical school hospitals or research hospitals. You might have luck at the local children's hospital, too. If you go to www.scalyskin.org, you can email Jean for a list of dermatologists that might be nearby.

Jennifer
_________________________
Jennifer
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"

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#20322 - 04/21/05 11:32 PM Re: Lamellar, info please!
Lee Offline
Member

Registered: 04/20/05
Posts: 7
Loc: Sydney, Australia
Thanks for the info. We have been going through the nearby childrens hospital with there three dermatologists, we just get lots of maybe's and could be's to our many questions. No one will give us any answers which is very frustrating!! But i will look into the info you provided, Thanks Again!

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#20323 - 04/22/05 04:21 AM Re: Lamellar, info please!
dpatock Offline
Member

Registered: 01/31/05
Posts: 44
Loc: Sacramento, CA
Hi Lee,

It seems from looking through the board on Lamellar that there are still alot of variations. But speaking from the experience we have had with my daughter (she was a collodian baby when she was born, has lamellar) we have seen VAST improvements over the past year (she just turned one last week). It seems that she has improved with age, and we also see it get better or worse with the weather (when it is cold and dry out, her skin is flakier), as well as with her illnesses (for example, she got pink eye, and her eyelids/forehead area, got really dry and flaky, but when the pink eye got better, so did her skin!). Anyways... she had prominent scaling on her torso, neck, face, and head when the collodian skin came off. It has improved SO much though... now she has issues only with areas where she seems to sweat?! armpits, diaper area, neck and head...but it is still greatly improved.

Products we use: TriCeram (you buy it online at www.osmotics.com... her derm recommended it .. Dr. Mary Williams) we use morning and night only because it is so expensive! Over the TriCeram I put Aquaphor. Then during the day we use Eucerin Plus (with the alpha hydroxy in it...seems to work better than regular eucerin). We have been doing this since she was one month old, and since it seems to work...we aren't changing it.

We are trying a number of things on her head because that is the biggest problem area for us. Neostrata.com sells a Neoceuticals Scalp Solution that seems to work well, and we are currently trying a prescription from her derm that is a mixture of 5% lactic acid with glycolpropolene (sp?).

Like I said, it seems that everyone is different even within the Lamellar family. You just have to try different things until you find what works best. I hope this helps! Good luck!
-Darcie (daughter Lily has LI)

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#20324 - 04/22/05 04:48 AM Re: Lamellar, info please!
Lee Offline
Member

Registered: 04/20/05
Posts: 7
Loc: Sydney, Australia
Thanks Darcie, its wonderful to hear that there is hope and her skin should improve. As you probably know doctors won't give any concrete answers which is frustrating (i quess they can't), so its great to hear what other people are using.
Thanks Lee

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#20325 - 06/05/05 02:23 PM Re: Lamellar, info please!
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
It improves with age. I'm 32 and have LI. If you saw pictures of me throughout my lifetime you'd see an enormous amount of improvement that supposedly will continue throughout my lifetime.

Diet DOES make a huge difference not only for skin health but for overall health in regards to preventing illness. Lots of water and other liquids, eliminate sugar and caffeine and of course restricting artificial stuff like preservatives, etc is always good. I have found that keeping my protein intake double the recommended daily allowance helps a lot.

There are all sorts of moisturizers out there and the only way you'll know what's best for her is by trial and error. General rules of thumb are to avoid things with perfumes, dyes, and alcohol content. Some products folks find most helpful:

petroleum jelly
Aquaphor
Eucerin
A&D ointment
wax based ointements (my favorite)

Vegetable or nut oils added to bathwater or applied after showering prior to mositurizing. The most inexpensive and closest to scentless is canola, but jojoba and almond oil feel the best (but are also the most expensive). Lots of folks use baby oil (scented mineral oil) but I've noticed that it doesn't absorb as well into the skin.

Many folks use lotions and creams with lactic acid or alpha-hydroxy acid to reduce peeling. Some folks just can't tolerate those as they burn too much so test those with caution and if your daughter shows any signs of discomfort, stop using them. Two names I can think of for them are Lac-Hydrin and I think Aqua-Glycol.

Shampoos that help are P&S by Baker Cummins I believe, T-Gel by Neutrogena, and many like Paul Mitchell's Tea Tree shampoo or other tea tree based shampoos.

As to soaps, Aveeno and Cetaphil are the two most commmonly recommended. Some folks can use Dove, others can't. It just depends on how sensitive the person's ichthyosis is.

What her skin is in contact with can make a huge difference. For now, keep her in soft things with minimal seams that are made of cotton. Avoid polyester or other synthetics if you can but polar fleece seems to be ok. Flannel also feels good and denim is quite durable and feels fine as long as it's soft denim. Cotton or flannel sheets are also a must. Avoid polyester like the plague.

If you're having problems getting the ointment to wash out of her clothing and bedding, try using a liquid dishsoap like Joy or Dawn, and a little bit of one of those oxygen cleaners like OxyClean. Regular laundry detergents might irritate her skin so definitely don't use powder as it doesn't rinse out as well as liquid does and if the liquid laundry detergent irritates her, try the dish soap method I listed above.

Definitely use lots of sunblock as she will burn incredibly fast. I personally like the "sunblock on a stick" as it's wax based and doesn't sting at all like some other sunblocks can. There are a couple of different sunblocks that are sold in stick form, many of which are zinc based. I've never had a problem with zinc sunblock nor heard of others having a problem with it.

If her feet and hands crack, soak them a bit, goo them up heavily with ointment, and then cover them with cotton socks for several hours if not overnight. Doing this on a regular basis will also prevent her hands and feet from cracking. You will also notice that the drier she gets, the stiffer her movements will be come at that is become her skin will hurt if it's stretched at all, so bathing at least twice a day if not more often is important and repeated applications of ointment to her face before it completely dries out will also help a lot. Try to make it fun for her to have the ointment put on and as she ages encourage her to help out with it as the more often she moisturizes the more comfortable she will be.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#20326 - 06/14/05 05:50 AM Re: Lamellar, info please!
Lee Offline
Member

Registered: 04/20/05
Posts: 7
Loc: Sydney, Australia
Wow, thanks Chandra! Things are already getting better, she's only five months now but we can already see a vast improvement. In some lights her skin even looks "normal". It gives you the strength to go on. We find that Cetaphil products and Eucerin are the most beneficial for her skin. And lots of baths is definately working. Alot of the products mentioned here are not available (or if they are i can't find them!) in Australia. Does anyone ever get better to the point of getting completly better? Thanks again Lee

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#20327 - 06/15/05 02:19 AM Re: Lamellar, info please!
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Hi!
Boy, I'm sure my parents wished there was a site like this when I was born (but then, that was even before Internet!). I'm 26 female w/ lamellar & was born a colloidan baby. I'm a mutant, b/c there has never been any family history of ich before. So I've been trial & error.

I have been getting better w/ age as well. I'm even to the point where I can wear makeup & look almost normal! But I don't think it will get to the point where it's hard to tell if I have ich or not. My hands give me away if nothing else! The most you can hope for is that your daughter will be able to use less "intense" lotions as she gets older. I started w/ Aquaphor mixed w/ lactic acid until I was about 18, then went to just using straight vaseline (petroleum jelly), and now I use mary kay lotions on my face & just vaseline on the rest of me.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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