lets make a really informative post so we can better help each other

Posted by: tyler

lets make a really informative post so we can better help each other - 08/13/03 05:12 AM

after reading a lot of the posts here ive got to say that i dont really feel like ive learned much as far as caring for my skin goes.

theres plenty of posts about products people use but thats only a small part of it in my opinion.

i think it would be really helpful to discuss things like:

what is your skin like if its left untreated, and for different lengths of time like say a few hours since treatment, a day, a few days...

what is your skin like when its at its best

what do you consider good / bad as far as your skin goes

what treatments do you use, and i dont just mean what lotions, i mean showers, baths, how long, how often, do you do specific things for your hair, scalp, ears, hands, whatever.

the more you can share the more chance there is for all of us to learn something and have a better life for it so hopefully people will contribute to this.
Posted by: tyler

Re: lets make a really informative post so we can better help each other - 08/13/03 06:22 AM

ill start, this might get long but i think the more specific we are the better this post will be.

well i guess ill start with how my skin is if its left untreated... pretty terrible. as a kid when neither me, or my family, or doctors really knew what to do for my skin it was pretty terrible. i had really thick scales of skin on the fronts and backs of my knees and elbows, i remember my lower legs were pretty much covered with thick brown scales. i cant remember exactly but i had scales in other places too, hips, knuckles, ankles, neck, armpits.
my skin would crack, badly, the worst spots were always my feet and the fronts of my hips (at the joint). and when i say bad i mean really terrible, like split right open and making it painful to move. sometimes to the point of bleeding.
my skin gets really tight when its dry, causing me to be stiff, just because my skin physically doesnt want to stretch. like not being able to straighten my arms or reach up high at all.

thats pretty much the terrible end of the spectrum. on the good end which is definately something that's come with time but what id consider to be a really good day for my skin is to go a full day without any sign of flaking, and losing only very little flexibility.

i guess i should add that over time ive gotten rid of all the thick, scaly areas that i used to have. as a kid i would have a long bath and then after getting out id scratch and scratch trying to get all the scale off. that probably wasnt the best way to go about it as far as pain is concerned but i guess its always going to be toughest the first time. and over time your skin gets to breathe and the scale is less thick and it only gets easier. im not sure if the scaling is a problem for anyone here but ill leave it at that for now.

as far as treatment goes that is the thing im really most interested in. knowing how my skin is now compared to what it once was im kind of reluctant to try a lot of the things a see mentioned on this site.

compared to how i was as a kid now the thick scaling is completely gone, the cracking is gone, my skin stays flexable enough to not really worry about it, the only thing now that bothers me is some light flaking sometimes happens if my skin is dry and also my skin seems to lose a lot of its elasticity over the day to the point where what will flex in the morning will wrinkle at night. the routine i have to go through to keep my skin like this though is what im hoping to improve on.

right now to maintain my skin as what i described as good before i need to have a long bath, every day. when i was younger i would stay in the water for about an hour, maybe 90 minutes but as i got older (i think mainly because i kept striving to get my skin better and better) the baths kept getting longer. now im in the tub 2.5 to 3 hours a day.

i should probably add that if im not able to keep this routine up, like say i miss a day or 2 it takes at least a couple days before my skin is back to being really good.

so to start i usually just sit in the water for roughly an hour, letting my skin soften up. at that point i remove any loose skin i can just by rubbing the areas where it builds up. i start with my legs as they tend to soften up first. then after ive removed any easily removed skin i lather up my legs with dish washing soap (liquid, i like to use palmolive) after doing that i will usually keep my legs out of the water until my skin dries right out with the soapy lather on it. then ill put them back in the water and rub off the soap. once ive done my legs ill start on my upper body the exact same way, first rubbing off any loose skin and then soaping up, letting that sit and rinsing it off. the soapiness of the water seems to help in loosening up any other loose skin so after soaking for a little longer ill again rub off any loose skin. at that point im pretty nearly done. i wash my hair just before getting out. i find that rather than lathering up the shampoo in my hair im best off just lathering it up a little at first and then just scratching at my scalp as i shampoo my hair to get rid of any flakes on my scalp.

having been in the water for so long i find this is also a really good time to shave, cut finger/toenails, clean out ears, things that maybe arnt as easy as they could be otherwise.

so thats basically it for the bath, the last thing i do is rinse the shampoo out of my hair and then i proceed to get out. immediately after getting out i put on lotion. i use vaseline. its not much fun being all greased up but its the only thing i can find that works this well. just after getting out of the water my skin is basically as not dry as its going to get so immediately i apply vaseline to my face, neck, arms, hands, joints (knees and hips) and my feet. the rest of my body i use vaseline cream which is basically a cream lotion with i think 30% vaseline mixed in with it. i use that for my chest/stomach, back, and legs.

after that its just a matter of letting it soak in. thats the real problem with vaseline is that it takes forever to soak in, and it takes that much longer becasue your skin is so moist underneath. i find it usually takes about 4 hours for it to soak in completely. in the meantime it helps to make sure that it is soaking in evenly everywhere, because some areas soak in faster than others. the slowest spots seam to be my forehead and on my cheekbones (maybe because the skin is thin there with little tissue underneathe?)

so yeah thats basically it. if i can i like to lay out in the sun while the lotion soaks in to open up my pores, get a little brown color to my skin (which is otherwise always red) and it also seems to speed up the process of it soaking in. you do have to be careful to avoid staying in the sun too long since with the vaseline on its easy to burn.

other things i can think of... drinking plenty of water definately is good. i dont really see a noticable improvement in my skin but i do feel better when i drink plenty of water.

alcohol... i saw this mentioned here before but when i drink my skin just goes to shiet. thats not to say i dont drink but it is at least something im aware of no matter how drunk i am because the only thing worse than an ugly drunk is an ugly ugly drunk with super dry skin.

so yeah this is a super long post but hopeully it can help some. and hopefully more people will contribute and help even more.
Posted by: ShaunaJ

Re: lets make a really informative post so we can better help each other - 08/13/03 06:24 AM

Ryley looks her best when I use the Tazorac. Her skin appears normal, still tight but pretty close to normal. She will still go through a small peeling phase but she doesn't mind it. Her eyes close lots better.

She looks her worst usually in the winter or when she doesn't have the tazorac. She gets lots of splits in her hands and feet. Her scale are dark and cover her legs, arms, hand, feet, face, and scalp. Her eyes don't close very good either.

Her ears are cleaned every 30 days by the ENT. The rest of the time we use drops.

Baths are done in the morning and night. She is lotioned after her baths and through out the day with Eucerin plus lotion for body cream for her face. The Tazorac is only used once a week. In her bath we put a special mix of oils sea salt and much more that helps soften the scales. Then with a loofa and brown sugar scrub we scrub the scales and flakes off. She soaks in this until she wants out, wich is sometimes an hour. I can send samples of the bath mix. A friend of mine did research on different oils and oats and stuff so she could find something for Ryley. What she made works and smells great.

Her scalp we still struggle with. She has so much hair it hurts to get the skin out. We just use baby oil Gel. Then a shower cap. To comb it out we use a metal dog comb. You can get it at any pet store. We use the fine tooth one. Hope this helps a little. If I missed anything or you have a question let me know.

Shauna Johnson

P.S Ryley is 5 and she has LI
Posted by: Lisa Marie

Re: lets make a really informative post so we can better help each other - 08/13/03 12:27 PM

Can you post the ingredients for the bath scrub so that I can try it? Thanks.
The main thing I do for my skin is to take hour long baths with salt in it, scrub my skin with a face cloth and put dermal therapy or vaseline on when I get out. I feel better in the morning if I've used vaseline, but it does feel gross, so I don't use it every time I bathe.
I shower in the morning and use the dermal therapy lotion and bathe at night. That does the trick for me.
For my scalp I alternate between T-Gel and T-Sal, which I leave on the entire time I am in the bath.
For my skin it's just a matter of keeping the flakes off so the moisturizer can work.
I, too, get wrinkly by the night time. That's why both the shower and bath combo work the best.
Posted by: ShaunaJ

Re: lets make a really informative post so we can better help each other - 08/13/03 06:08 PM

Here are the ingredients.
One is the Milk Bath. It has Powdered Milk, Goats Milk, Oat Flour, Sea Salt, Mineral Salt, Colloidal Oatmeal, Neem Pwdr, Corn Starch, Essential Oils of Lavender & Peppermint.

The people I know that make this make alot of soaps and bath needs. They have a cool soap the make with a loofa built in. Ryley likes this at times to because she can lather up an loofa at the same time. They also work good when the scaling is soft. We use the brown sugar scrub also. I lost the ingredients for that. If you try making it and can't I will send a sample if you would like.

Shauna Johnson
Posted by: Sirena

Re: lets make a really informative post so we can better help each other - 08/17/03 03:52 AM

Hi Tyler,
The only time I go with out treating my skin is when I am out camping. Then I feel like the tin man on the wizard of oz "OIL! I NEED OIL" During my worst times is during the coldest and dryest part of winter when my skin can crack so badly that I look like an old lady when I am walking. It is at it's best during the summer, especially if I am at the beach. As to treatment,

Lots of baths often with salt water, lots of soaking and scrubbing, I actually use a dull knife to scrape scales off sort of like you would when descaling a salmon.(My friends and I often joke around about me being a mermaid, I spend so much time in the tub, I am part fish (ichthy) and part human, I have quite the mermaid collection now.)

I use lac hydrin once or twice a day mixed with vaseline intensive care or nivea or sometimes body butters. I constantly try different things when it comes to lotions these days. In the morning I top off the lac hydrin with a layer of glycerin which I have recently found works much better than the vaseline and aquaphor I have been using all my life. I have found that now my skin can breathe easier and I have much less scaling, it is much smoother now. I have tried and like protopic but have to use it sparingly since I have a sensitive liver. My skin doesn't interfere with my job or my life much just occasionaly does it become a problem for me. I am curious about the soritane everyone has talked about but don't want to trade one problem for another. I will be checking into the tazorac/protopic pill when it comes out since I had good luck with it but will do some more research before I do. That is all I can think of for now. Take care
Posted by: pauline5

Re: lets make a really informative post so we can better help each other - 08/18/03 12:57 AM

Oh Sirena,

Your bath routine is exactly as mine is...long soaks, salt, and scraping off with a knife...SO FUNNY...

And I too look like an old lady in the winter months, when stiff, cracked and dry...

I can't add much more to this Tyler...
Regards Pauline.
Posted by: Sirena

Re: lets make a really informative post so we can better help each other - 08/20/03 05:25 AM

Hi Pauline,
Great minds think a like? [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
I thought I was the only one crazy enough to use a knife. Not too many scars! I left the knife out though and my 10 year old used it to poke holes in the shower stall so I have to make sure I put it away. Take care,
Posted by: pauline5

Re: lets make a really informative post so we can better help each other - 08/20/03 09:12 AM

Hey Sirena...

Regards the knife using...As Paul Hogan would say Mine "is not an ordinary knife"...I use a Surgical Scalpel...but luckily for me I don't have any kids running around the house....I keep it on an envelope just behind the bath taps...

And I remember one time last year, when my scraping judgement was so poor, that I DID HAVE quite a few slash marks over my arms and legs...It kind of freaked my Psychiatrist out....And my mother told my husband to keep those scalpels out of MY SIGHT....LOL...it was so funny...

No one trusted me with that scalpel...and my dermatologists were not too happy either....They asked me if I realised how fragile my lower skin layers were...and they also said that the scraping can have an opposite effect in the long run...as they felt that it could promote callouses to form (elsewhere aside from my thick hands and feet)...

Now I have the salt working wonders, I don't need to scrape the body with a knife anymore...except for hands and feet....

Sirena, do you ever tell lay people what you do with that knife...People almost faint when they hear that we can cut our skin off...it cracks me up that they think we would be in excruciating pain like normal skin would be...

I had a relative who just couldn't watch when my mum spent 1 hour cutting the skin off the soles of my feet...

Has anyone who has EHK...(thick hands/feet) ever tried to cut a long piece off without it breaking....JUST LIKE PEELING AN ORANGE?
it is great fun...

HAPPY SCULPTING... [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Love Pauline...
Posted by: Annamarie

Re: lets make a really informative post so we can better help each other - 08/20/03 05:30 PM

When reading the skin care regimens I noticed many use a knife to get the scales off. What my son has been using for years with great results, and much safer than a knife, is a plastic putty spatula. It has an uneven edge, and lifts up the scales easily. Recently though he began doing the salt bath soaks, and the scale buildup is decreased dramatically. I think now he is just using a wash cloth. I am truly amazed at the difference the salt baths make. So far he has been using regular table salt, but I have ordered some dead sea salt that I must just add with the table salt. At my local Smart N Final you can get a 20 pound bag of table salt for around $5.00. The dead sea salt with cost me $70.00 for the same amount. I want to see if the minerals in the dead sea salt make a bigger difference.

Posted by: Sirena

Re: lets make a really informative post so we can better help each other - 08/21/03 05:50 AM

Actually that was the first time I told anyone, I figured everyone would think it was too weird. I have nothing as fancy as you and probably a good thing since I can be a clutz. I don't do that everyday, once or twice a week and I usually just get the dead skin off and try to stay away from the lower layers, mainly cause it really hurts if I don't.
I am going to go check out some of the salt websites you posted next. Take care
Posted by: pauline5

Re: lets make a really informative post so we can better help each other - 08/21/03 08:13 AM


it is not that I deliberately sought out the surgical scalpel....as I have owned it since I was 5 years old...that is 34 years old...

My mother used to have District Nurses come to our home 4 nights a week, to bath me, and scalpel my hands and feet...they would sit there for 1 hour 4 days a week cutting the thick stuff of my skin...and they did this until I turned about 16 years old...and then I took over...

But I hardly use it now...just scrape the soft surface stuff, when I hve been soaking too long....

And AnnaMarie you are so right...it is remarkable...and I swear that the salt must be capable of slowing our skin growth down...I just feel that the scale stops growing thick again....

You know before I started the salt baths, I put one application of 12% Lactic Acid on my legs and arms, and wrapped myself in plastic for 12 hours, and after that I haven't needed to touch the acid cream...The salt has just stopped it in its tracks.....ABSOULUTELY AMAZING STUFF....and I am glad to see that it is not just my imagination...or exaggeration....

And this is why I don't need the scalpel on my body anylonger, like your son, a facewasher rub is sufficient enough....
Posted by: mary bellucci

Re: lets make a really informative post so we can better help each other - 08/21/03 02:00 PM

How much of the salt do you put into the tub? I have some dead sea salt and would like to have my son try this. Thanks!
Posted by: Annamarie

Re: lets make a really informative post so we can better help each other - 08/21/03 05:40 PM

I just put an old plastic laundry soap scoop in a big container of salt for my son to use. I have him put in 2 scoops. It probably comes out to about 2 cups, maybe a little more. Try to find a place that sells bulk table salt, it's much cheaper than the dead sea salt. I want Ryan to try the dead sea salts because of all the minerals, and maybe I will just mix half and half with the table salt.

Posted by: Sirena

Re: lets make a really informative post so we can better help each other - 08/21/03 11:49 PM

I have been looking for an alternative to the steak knife, thanks! I will try to puty knife next.

I was wondering where you got a scapel Pauline, I thought that maybe you were a nurse. I have not been using as much salt as you guys but what I do use helps a lot, I will try to double it and see what happens .. Has anyone checked to see who has the cheapest dead sea salts or maybe we should change the name to "dead skin salts" [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Too bad we don't all live closer, we could start our own little ichthyosis co-op and save some money on all these products we are buying all the time. I know one thing, thanks to this website my skin has improved dramatically since this time last year thanks to all of you and your ideas. I appreciate it.

You know everytime I put in salt into my bath I look at my mermaid art work on the wall and chuckle. I am beginning to think we really are decendents of the original "mermaid" people.
[img]http://www.ichthyosis.com/ubb/smile.gif[/img] Just wished I looked like Daryl Hanna from the movie "Splash"!
Take care.
Posted by: Chandra

Re: lets make a really informative post so we can better help each other - 08/25/03 05:15 AM

I seem to recall that some manufacturers will give you discounts on their medicated lotions if you order direct from them and identify yourself as a member of F.I.R.S.T. I could be wrong about that, so check their web site at www.scalyskin.org If it isn't shown on their web site, email them or call them to double check.
Posted by: tyler

Re: lets make a really informative post so we can better help each other - 10/06/03 04:11 AM

hey thanks for all the replies everybody

those of you using salt baths, what effect does it have? i know i tried salt baths when i was young and didnt really like it.
then again i can understand how it can make your skin softer faster than water alone so maybe its worth another try. i can keep my skin from scaling/flaking as it is as long as im able to tend to it every day but if this lets me do it quicker then that'd be a big plus. its not going to leave my skin tasting all salty is it?

to those using knives i can relate, i use a pointy nail file to get under the thick skin on the soles of my feet. i havnt really found a good way to keep the soles of my feet good though, its more like wait til its really bad, get everything off, repeat.

for hair i use outrageous brand shampoo (for normal hair)... nothing special. i just make sure my scalp is plenty soft before i shampoo (i do it at the end of a bath). i had fairly long hair at one time and did have trouble with flaking. i also found that a metal dog comb worked good (used to have 3 of them). now i just shave my hair short, its definately a big improvement. also with short hair i can massage some lotion (vaseline usually) onto my scalp and then just wash out my hair with soap & water later on.

one question i have for all of you is what do you do about showering at the gym/after working out or after going swimming. i find that just applying normal lotion (say vaseline intensive care) my skin will eventually dry out much worse than it was before. problem is that it needs to be something that soaks in quickly... cant really chill in a change room waiting for lotion to soak in.

thats about all i can think to add, well i guess one change. i used to always have baths at night, before i went to bed. i always hated that because it choked off my social life and also because i would always be feeling my worst, that being the longest time since id cared for my skin, in the evening when i wanted to be doing things. so this year i set up my schedule so i dont have classes til 11 every day, ive been getting up at 6, having a 2.5 hour bath, then i eat, take a bit of time to relax, watch tv, whatever and then ill work out for about a half hour and try to leave myself about an hour or so to make sure my skin isnt greasy before i get dressed & go out.. its definately tough getting up but this way im feeling my best for the day to come so im happy with it. i just need to find a way to bathe while i sleep and id be set. =)
Posted by: Chandra

Re: lets make a really informative post so we can better help each other - 10/09/03 10:19 PM

When my skin is left completely untreated for six hours or more, the peeling starts increasing dramatically as my skin is drying out. As it dries out, my skin tightens, making walking and movement painful. If I can get into a bathtub within 8 hours after the last time I bathed or showered, the ill effects are immediately remedied.

When I was a child, I participated in a study where I was not to bathe or moisturize for two weeks. By the time the third day passed, I was in agony just sitting. Any contact with anything - a hug, trying to move to pick up a toy or a book, hurt immensely. My mother told me to go take a bath but not to moisturize afterwards. I felt better for only an hour before I was just as dry, and I went to bed at my grandmother's (where I was to stay the weekend). My grandomther didn't have the heart to keep me from moisturizing and bathing after seeing how much I was still hurting, so she called my mother and told her I was just as bad the night before, so we eneded my participation in the experiment.

On very rare occasions I have gone 20 hours between a bath/shower, and that is usually if I am travelling, or there has been some sort of emergency situation where I needed to drop my normal routine, such as if someone has had an accident or illness and I need to go to the hospital to be with them, etc.

When my skin is at its best, it feels relatively soft, with little peeling. It is pale (for me, pale is rather pink compared to most caucasians) and somewhat supple. I still cannot abide having much pressure strike my skin - such as one feels when dribbling a basketball, or running across pavement of some sort.

I consider my skin good when there is very little visible peeling on my face and neck, when my skin does not hurt, when I have a free range of motion with my hands and legs (because the skin is not so tight I can't move all the way) and when I am pale due to not being either overheated or sunburnt. I do have to stay covered from the sun at all times as I burn in less than ten minutes, even on overcast days. The only time I don't have to cover up from the sun is when it's raining or foggy.

I bathe or shower two to three times a day, depending on my schedule and how I feel. If I feel poorly, I may bathe up to four times a day. Baths are always better than showers, I think it's because most of my skin gets immersed in water and can absorb more.

I use a scalp treament to help keep scales off my scalp at least once a week, and use a special shampoo anywhere from 1-4 times a week.

I clean out the skin flakes from my ears roughly every other day or three times a week.

As we don't have a dishwasher (other than me) I wear disposable latex gloves whenever I wash dishes to protect my hands. If my skin gets wet and I do not moisturize it with both oil and ointment, it dries out very badly and becomes painful. I use the disposable gloves instead of the reusable ones because I am very susceptible to skin infections and using gloves only once cuts down on my chances of giving myself an infection.

If I have been doing something with my hands that has exposed them to friction - like folding clothes, sewing/quilting (my hobbies) or handling a lot of paper, after I'm done with whatever I was doing, I will wet my hands, put aloe and then petroleum jelly on them and put them in gloves for at least an hour. I should do this more often than I do, probably at least once a day, but I only do it a few times a week as my hands get so hot and stinky in the gloves.

I have to clean the rims of my eyelids several times a day as I have severe ectropian. My eyes produce what I and my family call "eye goop." If I do not clean it off frequently, my eyes start to sting and my vision gets fuzzy. To clean it off, I wet either a cotton swab, washcloth, piece of toiletpaper, etc and gently rub it across my eyelid to remove the goop. If I don't wet something and the goop is dried on, my eyelid will get scratched and bleed. I am told I am fortunate in that even though I have ectroprian so severely, my tear ducts still work well enough to keep my eyes moist. My tear ducts actually have to be overactice (which they are) to keep my eyes most as the ectropian is bad enough that the tears don't stay in my eyes, often making it look like I'm crying to people who don't know me.

So that's my routine.
Posted by: sofia

Re: lets make a really informative post so we can better help each other - 11/04/03 03:35 AM

Well, alot of questions but good one's to answer.
First, my skin is dry right around my menstral cycle probably the week before my period. I am assuming harmones. The 3 weeks after my cycle my skin looks normal but of course with the help of Lac Hydrin. I can control it know which makes me happy. True it a ritual every morning but at least I look half way decent by the time I am done. I, particularly get dry in the afternoon so I take a moment in the bathroom lathering up with Nivea cream. I feel better once that is done. I guess the better months are the warmer months for my skin and the worst are the cold months. However, I did notice right before it snows my skin get somewhat soft. Ironic, huh! but true. I feel on good days (emotinally) my skin is at its best and the worst days it is just horrible. I hope that this winter in NY will be an easy one so my skin is somewhat decent. What I do get upset about, with my skin, is when its very dry. Boy does it hurt and it flakes like crazy. Those days I just pray it will get easier as the day goes on.

A small note that I have been using for years pumice stones to scrub my skin. I find that once the skin is soaked for at least 10 minutes the easier it is to rub with the pumice stone. Dove, makes a great soap which definently does the trick and it smells great. I also use Mineral bath salts which help the skin soften up.

I also lather up at night if I feel extremely dry with either Vitamine E cream or Nivea and use a cotton pyjama. This helps enourmously at night and especially in the morning.

I also need to take care of my eyes now more than ever. The deterioration of my cornea due to the ichthyosis and the pulling of the my skin has put me in a routine. I put an ointment called muro ointment and than I use aquaphor to close the eye that somewhat helps to help soothe that dryness.

Hope that helps a bit.

[This message has been edited by sofia (edited November 03, 2003).]
Posted by: Korthaln

Re: lets make a really informative post so we can better help each other - 11/26/03 11:52 PM

Hi All..

Im am just starting to look into this condition.. I think I have some form of it, but I am not sure which one.. It is not as bad as any of yours. The worst I get just some slight flaking on the face and arms.. And black scales on the back of my legs.. I shower once a day in the morning and scrub with a hard sponge and then just put some curel cream on afterwards and my skin will stay soft. I find I have to switch creams every 4 months as my skin seems to build up a resistance to them.. Then after about a year, i can go back to them and they work again. I can go for a couple of days before the flakes will be noticable by others. The worst spot is my hair.. I just cant keep it flake-free, I just wanted to know what is a good product to use in your hair to help??
I have pretty short hair and the only way I can ever get rid of the skin is when i buzz my hair away..
I also live in Ontario and the climate has effected me in the past, but It seems that my skin is getting better on its own..During the summer, My skin is perfect and I dont have to apply anything to it to get it to be soft and my fingers dont crack up anymore..
The sun really seems to help my skin and I dont know what vitamin the sun gives out..

Umm.. I think thats is all I have to ask and say.. Thanks for listening to me ramble along!
Posted by: ShaunaJ

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

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..

Posted by: Anonymous

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

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.
Posted by: Chandra

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

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!
Posted by: Hearsay

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

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]http://www.ichthyosis.com/ubb/smile.gif[/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.

Posted by: mia'smom

Re: lets make a really informative post so we can better help each other - 06/23/04 11:30 PM

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