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#15673 - 11/27/03 06:00 AM Re: lets make a really informative post so we can better help each other
ShaunaJ Offline

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
I use either Bakers P&S on Ryley or just baby oil. They seem to work great. Somebody else has said there is a shampoo with Tea Tree Oil in it and that it is wounderful. i am going to try it next month to see if it works better. Hope you find something good that works, and welcome to the board..

Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

#15674 - 11/27/03 02:21 PM Re: lets make a really informative post so we can better help each other

I don't know how bad your scalp is, if it's not too bad you can try a shamppo called T-SAL. It's for problem dryskin/dandruff. I think you'll also find that it isn't the sun that makes your skin better, it's the heat and humidity during summer months. The cold dry air of winter, especially where you are from, is what makes our skin worse in winter time. By the way, the sun provides you with vitamin D. Hope this helps.

#15675 - 11/29/03 02:58 AM Re: lets make a really informative post so we can better help each other
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I frequently use P&S Shampoo, it's my favorite. However, it's been on backorder in my area for something like five months now so I've started using DHS, and that works fine, too. Both are available by asking the pharmacist. You don't need a prescription but they usually keep it behind the counter so you have to ask. The DHS is much more resonably priced than the P&S. I don't know if it's equally effective or not, but in a month I should know. I do know that the DHS is much less expensive than the P&S.

T-Gel is sorta ok in my opinion, but not as good as the other two. Plus, it's smelly and it makes my hair color darken. I might like that as I get more grey hair, but right now that's not a big problem. Let's all cross our fingers that it stays that way for several more years!
I am female, and was born in 1972 with Lamellar Ichthyosis.

#15676 - 06/22/04 05:03 PM Re: lets make a really informative post so we can better help each other
Hearsay Offline


Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Tyler, your routine sounds a lot like my husband's and son's.

We have an EHK variant.
One thing that Brian does every 6 weeks or so is to use a hand-held power sander on his feet. He used to use a Swiss army knife to hack off the EHK callouses, but then I discovered the Dremel. [img][/img]

To do it without burning yourself, it works best when fresh out of the shower. We put a chair in the shower stall and put a towel on the floor inside and outside the shower. He Dremels his feet, then folds up the towel and wraps it in the tower outside the shower so I can put it directly in the washer. In the meantime, he turns the water back on and rinses the dust off, then gets out and creams like usual.

Creams we use are Jergen's Ultra Healing and Cetaphil. There is also a melaleuca oil cream that we have tried and been successful with.

Brian and Nathan get VERY itchy if they miss their bath, even one day. Nathan has on 3 occasions so far reached into his diaper and scratched his back until it is bleeding.

Right after the bath (hour for Brian, abou 30-45m for Nathan, who is milder) their skin is very fragile. The lightest touch will take off layers - I can get extra skin off Nathan's face just by rubbing with the towel or my finger. It dries VERY quickly, so I have to get cream on it within 10 minutes or else get back into the shower and get him wet again.

The palms and soles are the worst - they get a lot of buildup and rubbing the skin doesn't take off the layers like it does on the arms, legs and back. I use a heavy-duty nail file (like the acrylic nail salons use) about every 3 days on Nathan's palms and soles. Brian does his hands every 2-3 days, and lets his feet go until it is Dremel time again.

We use the plastic wrap on Brian's feet in the evening for a couple hours so he can walk. He discovered that leaving it on all night makes them itch too much and makes them prone to growing mold or bacteria or something green.

For Nathan, I put Aquaphor under his toes and put regular socks on, then file them in the evening.

We do showers, not baths, because of the amount of skin that builds up in the tub clogs the drain and is nasty to clean. We soak for 10-20m, then come out of the water stream and rub the skin to whatever degree of success we have. Brian uses his hands and Safeguard soap to remove skin. I cannot use soap to get skin off either of them - I use my own skin oil to get a spot started, then I don't rinse the loose skin off until I am done. It gives me some friction. I soap at the last minute, then wash his hair with either baby soap or dandruff shampoo, depending on how many open sores he has. The baby comb takes the scales off his head pretty well.

We have tried the salt baths. It does nothing for us in both light or heavy concentrations. We have tried Tazorac. Nathan ended up with raw hands from 2 days use. It isn't worth it. Brian used to be on Retin-A. He decided it wasn't worth it because it would not penetrate the thick layers on his hands and feet, and took too much off the thinner areas.

For ears, Brian has folded a paper clip into a swab shape so he can scrape his ears. He follows up with a q-tip. I use just regular q-tips for Nathan, but it is only successful when he is wet. I have a Dr. Mom otoscope ($20 US from Ebay!) so I can check for buildup, and we have a standing appointment at an ENT if necessary. So far, we haven't needed it.

Wintertimes are worse for us, so we run humidifiers in both bedrooms. We also have a wax machine that works when the air is dry.

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"

#15677 - 06/23/04 11:30 PM Re: lets make a really informative post so we can better help each other
mia'smom Offline

Registered: 04/07/04
Posts: 8
Loc: Hamburg, Arkansas, USA
I know what you mean about thinking of icthy as being a mermaid. I like to think of my daughter in that light (she died 3days with harlequin icth) I don't believe she was a mistake. i believe she is
something better than normal people. She was us evolving, growing a protective armor. I think if all the problems (limited movement, dehydration, etc.) could be cleared up, maybe it would be benefitial to have skin such as hers. Insects and some animals benefit from thinkened skin. Maybe it would protect from radiation (sunburn and nuclear). Have you seen Hellboy or read the comics? I think of her akin to Abe Sapien. They even make mention of "icthy" in the movie. If we could have just made her a little tank for her to swim in, her skin would not have broken and she might be here. I mean we all breathe water for 9 mths (remember the Abyss). Don't think that I am crazy, these are just some ideas that I have been coming up with since I think about it all the time. Here is a rough draft of a poem that I wrote about her.

I want to hold you close
but your skin keeps us apart
I never imagined it could cause you pain
that which holds others together
keeps us away
your skin binds you in
Oh Anima,
to break your chains
I'd cut them with my very life
but I can't touch them
the links fall from my grasp
and you felt pain
and I feel pain now

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