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#15624 - 05/16/03 03:49 PM Does it get better ?
Solomon Rumicha Offline
Member

Registered: 08/15/00
Posts: 49
My son has Lamellar and is 6 years old. My question is does his condition get any better as he gets older ? In what way does it get better with out changing the care he is given now ? Our main difficulty to care for him is, the back of his neck and his feet. What are you guys doing to get rid of the skin around the neck and feet ? We tried the Paraffin Wax on his feet and hand and didn't make that much difference. Also we try to wrap his leg with plastic over night and remove the skin in the bath the next day. It helps to some extent, but didn't get rid of the whole thing. Any suggestions ?
Thanks.
_________________________
solomon rumicha

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#15625 - 05/17/03 06:14 AM Re: Does it get better ?
Sirena Offline
Member

Registered: 05/04/03
Posts: 57
Loc: Wasilla, Alaska
Hi Solomon,
This is the first time I have written on this bulliten board. I grew up thinking I had lamellar but later another doc decided it was CIE. I think they are pretty closely related. My brother also has it. The answer to your question at least for us is yes it will get better. When we were younger we had many large nearly black patches, epecially around our neck. Though we took lots of baths, usually a couple a day, people of ten thought we were dirty and in fact had someone call social services on us. (My mom was mortified.) Though we still have it we do not have the dark patches and the scaling is better. We have found lac-hydrin to be the most helpful though I also have found protopic to work well. It has to be used more sparingly though because it can be aborbed into your system and mess with your liver. I use it every few days on my face and neck. It sort of feels like a mild sunburn until you get use to it. Long soaks and lots of scrubbing help too. I remember my mom made plastic pjs for us to sleep it. I felt like some kind of jr. astronaut!
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Michele Menzia

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#15626 - 05/17/03 10:12 PM Re: Does it get better ?
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
Yes it gets better, I'm 52 and am much better than at 6. Realy didn't notice a change until late 20's. Lac-Hydren is the only thing besides reinoids that has done much good. Good luck, Randy

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#15627 - 05/20/03 07:35 PM Re: Does it get better ?
kevin246 Offline
Member

Registered: 05/31/01
Posts: 20
Loc: Tennessee (USA)
I am 34 years old and have LI. It seems to do better with age, however, that is not to say I do not have problems with it. For the skin on my neck and feet, I use Clinique Mild Scruffing soap two to three days per week. For lotion, I use Fragrance-free Lubriderm (sold almost everywhere and it is relatively inexpensive). And for sunblock, I use Banana Boat 50 Sport (greaseless and it does not really smell like sunscreen).

Just be careful that he does not get overheated. Take care! Kevin

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#15628 - 05/28/03 06:42 AM Re: Does it get better ?
Beth Engerman Offline
Member

Registered: 08/23/00
Posts: 106
Loc: Indianapolis, IN USA
I definately agree that it gets better over time. I am in my early 20's and can really tell a difference between my high school senior pictures and my college senior pictures. I think it is important to try many different things because everyone reacts differently to different products, but the trick to that is trying things out for an extended period of time before trying something new, because results do not happen quickly. I use a lotion that I have mixed by my pharmaist, 10% lactic acid mixed a creme called velvachol. I have been using this most of my life and have continued to find it to work well. I also find swimming in pools to me very helpful due to the cholrine. Make taking a bath and scrubbing the skin a fun experience for your kids, becasue the more they enjoy it the more they will want to do it, which will ultimately help their skin to look better.
_________________________
"Our greatest fear is not that we are inadequte; but that we are powerful beyond all measure." Nelson Mandela

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#15629 - 11/06/03 08:28 AM Re: Does it get better ?
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
Absolutely it gets much better. I know what you must feel my mom had the same fears. I believe it was worst when I was younger especially my face. My face was so dry until puberty. Than a miracle happened and I got a "normal" face. Best part is I never broke out into pimples it was always clear but there was enough oils to keep my face from looking dry. I am now 31 and I have never seen my skin better than it is now. I honestly believe that hormones play a big role, since I was diagnosed with an underactive thyroid, I have been taking synthroid and this has helped alot. Also Lac Hydrin helps. I mix this with glycerin and it makes my skin even silker. I hope that this will help you. I know my mom worried about me if I would ever have a normal life and it turned out fine. In some ways Ichthyosis has made me a better person for it.

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#15630 - 11/06/03 05:29 PM Re: Does it get better ?
CHLUKE2003 Offline
Member

Registered: 10/25/03
Posts: 19
Loc: ANDERSON,SC,USA
i am 54 yrs old and have cie. i try to forget life before age 10 or so. my skin began improving in my late teens and now it really isn't too bad. except during my guinea pig stage aged 10-13 when i tried all kinds of lotions, i basically have only used vaseline on my skin. thanks to the people on this site i have begun trying different products again. so far dermal therapy mixed with some glycerin seems to work real well.
i do not know what kids are like today, but kids made fun of me when i was very young. my solution to that problem was very simple. i began exercising and became quite athletic and very strong, but not to the extent of bulging muscles. by age 11 no one ever called me any name again. i know all of you mothers will think that is terrible, but i think most of the guys will understand. my general health also improved as i had been quite sickly previously.
this may seem obvious, but keep the kids fingernails cut regularly so they can't harm themselves scratching.
let your children know they are not alone in having this condition. i thought i was the only person in the world with ichthyosis as i never knew of anyone else who had it. i used to get mad at God for doing this to me.
now i know it really isn't so bad. i lead a normal life,if there is such a thing. in some ways having cie has made me a very strong person, a survivor.
sorry if i am rambling, i never have had anyone much to talk to about my skin.
_________________________
I am not sunburned

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#15631 - 11/06/03 06:20 PM Re: Does it get better ?
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
I second the view on the importance of exercise and fitness to build self-esteem. I haven't done much in a year; don't even have a chance to walk when I play golf, and I am feeling the sluggishness now, not to mention the less appealing figure in the mirror. Body consciousness is not always a bad thing.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#15632 - 11/07/03 12:24 AM Re: Does it get better ?
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
Note to CHLUKE, as I have replied to this post, I have LI 53, Email me if you would like, maybe compare stories, Randy

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#15633 - 11/07/03 02:36 AM Re: Does it get better ?
Anonymous
Unregistered


CHLUKE,
I pretty much had the exact same childhood. Teased very badly even though I was in catholic school. I got in more fights then I can count, all when I was too young to really know how to fight and still quite spastic. When I hit my early teens I started working out, surfing and swimming alot and learned how to box from my dad(he was light heavy weight champ when he was in the marines). Even after all that exercise and training I never hit anyone in anger over a comment about my skin. Just when you think life is going to be miserable and never change, people grow up and mature.
Keith.

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