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#4503 - 04/26/06 02:03 AM alternating bath days?!
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
Hi All..

We recently took a mini 3-day vacation and while we were dilligent about keeping Evan's skin moisturized (he is a 10mo with Palmar plantar EHK), we were a bit more relaxed about his baths. He went swimming in a pool on Wed PM and then we did not do the bath routine again until Saturday morning. We did moisturize him in the morning & evening. He gets Ultra Healing Curel on most of his body, olive oil in the groin area and Aquaphor on his hands and feet. Dare I say it, but his skin seemed slightly better than usual. It was much less red and he definitely had fewer blisters. Could it be the break from the bath?

Any thoughts or experience would be greatly appreciated.

Thanks.
Kimberly

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#4504 - 04/26/06 04:46 AM Re: alternating bath days?!
Kotick Offline
Member

Registered: 01/29/06
Posts: 205
Loc: Brisbane, Australia
I have Lamellar Ichthyosis and I have found my skin to have a similar reaction. I enjoy hiking and camping in general so I often have to go without a bath/shower for a few days and find it no real issue as long as I keep up the moisturising creams. I use sorbelene cream and find it actually works better without a shower/bath, but it is harder to apply. In my normal daily routine I shower morning and night, and bath 2 or 3 times a week and I find that enough to stay comfortable. Just depends how much humidity is in the air.

Hope Evan's skin is going well...

Jeff

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#4505 - 05/08/06 03:39 AM Re: alternating bath days?!
RobboMC Offline
Member

Registered: 03/17/06
Posts: 29
Loc: Sydney, Australia
If you see a small signal like this that something slightly different might be an improvement, and it won't harm the patient, then give it a go for a while and see how it works.
I was using an oil in my bath, I was told by doctors to always bath and hardly ever shower. But on a camping holiday with no bath for 2 weeks I was forced to shower; so I started putting the bath oil directly onto my skin during the shower. 'Better than nothing' I thought. In 2 weeks my skin improved so much that now I always shower with the oil and hardly ever bath.

The moral of the story - if something different looks like it might work, try it properly and monitor what happens. Sometimes we make the best discoveries by strange means.

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#4506 - 05/12/06 11:35 PM Re: alternating bath days?!
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Indeed, everyone is different. I have LI and baths are far better for me than showers, though I always do Robbo's trick of oil directly on my skin after a shower.

I do best with 2-3 long soaks in the tub each day but I usually "manage" with a shower in the morning and a 20 minute or longer bath at night.

If I only take two showers a day, I'm pretty uncomfortable. If I don't bathe or shower at all for a day, I am miserable and will often be in a lot of pain.

Lotions, no matter what kind, seem to do more harm than good as they moisturize me but aren't heavy enough to not evaporate off, so I'm best off with ointments. I tried the acidic lotions for years and they burn like the dickens so I never touch them anymore, even if it's only 2-3%.

I have chatted with some folks who have LI or EHK that do much better by showering/bathing as little as possible.

I've never tried exfoliating with something sticky like tape, but it makes sense because I can't wear bandaids. All the flakies come off on the adhesive and the bandaid falls right off! Maybe a strongly sticky lint roller would also be something to try... I just wouldn't recommend this technique for someone who has body hair but I think body hair is pretty sparse on many of us with ichthyosis so maybe it isn't a concern after all.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#4507 - 02/13/08 02:13 PM Re: alternating bath days?!
wiangube Offline
Junior Member

Registered: 11/30/07
Posts: 3
Loc: Armenia, Quindío, Colombia
Hi Chandra,

I think I understand you. I've used some products that do completely the opposite action they announce. No matter if we're talking about oils, mixtures, acidics, alcohol. Many of them are just some ads-with-no-ground.

That's why I started to create my own oils. But this has been a hard (very hard) work. I have checked some good sites that sell shower oils (like http://sabonnyc.blogspot.com) but it's really difficult to replicate their products.

I would recommend you, before exfoliating, to try to create your own oils with 'soft' ingredients like milk. I'm telling you this because some of my friends have got terrible results after exfoliating.

Quote:
Originally posted by Chandra:
Indeed, everyone is different. I have LI and baths are far better for me than showers, though I always do Robbo's trick of oil directly on my skin after a shower.

I do best with 2-3 long soaks in the tub each day but I usually "manage" with a shower in the morning and a 20 minute or longer bath at night.

If I only take two showers a day, I'm pretty uncomfortable. If I don't bathe or shower at all for a day, I am miserable and will often be in a lot of pain.

Lotions, no matter what kind, seem to do more harm than good as they moisturize me but aren't heavy enough to not evaporate off, so I'm best off with ointments. I tried the acidic lotions for years and they burn like the dickens so I never touch them anymore, even if it's only 2-3%.

I have chatted with some folks who have LI or EHK that do much better by showering/bathing as little as possible.

I've never tried exfoliating with something sticky like tape, but it makes sense because I can't wear bandaids. All the flakies come off on the adhesive and the bandaid falls right off! Maybe a strongly sticky lint roller would also be something to try... I just wouldn't recommend this technique for someone who has body hair but I think body hair is pretty sparse on many of us with ichthyosis so maybe it isn't a concern after all.

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#4508 - 02/13/08 03:35 PM Re: alternating bath days?!
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
Kimberly, it might be from the relaxed bath schedule, but there may be other factors.

Where did you go on vacation? If it was a warmer, more humid climate (not cold and windy like most places are this time of year), that could have a positive effect on his skin.

Also, what kind of pool did he swim in? Salt water pools are awesome for our skin. Chlorine pools can be a little drying for some, but they have the opposite effect on me and help my skin look better.

But if you've kept up the relaxed bath schedule after returning home and Evan's skin is still better than usual, then you know that he doesn't need to be bathed quite so often!
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#4509 - 02/13/08 07:18 PM Re: alternating bath days?!
cara&babyt Offline
Member

Registered: 07/12/06
Posts: 258
Loc: Fort Walton Beach, FL,USA
I know CIE is very different from Palmar plantar EHK, but we tried less bathing about 3 months ago, he gets a long soak only about every three days and a refreher rinse down between every now and then, and it seems to effct him the same as bathing every day twice a day. I do see a little more scale, but it dosent seem to make him any more uncomfy, and the scale comes of better on the bath days, because it seem ready to come off more than every day, and i must say it is easier on me and him and we get to do funner things like go out earlier or read more stories etc. And moms back and neck feel way better to. LOL. I will say he is reder than he used to be but that that started way before less bathing. Like the others say, wont hurt to give it a shot, and check out the results.
_________________________
Cara Griffith and Teofilo Tundidor III (son 3 with nb-cie)
patricestudios@hotmail.com
Ft. Walton Beach, FL

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#4510 - 02/28/08 06:31 AM Re: alternating bath days?!
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Kimberley,

I also have palmoplanter type EHK.

The first thing that came to mind for me was the mention of your son going in the pool...as someone mentioned it can dry out our skin, but it can also be good at killing bacteria, and stopping too much emaciation of the skin.

I mainly have showers these days, but I love my baths...because i am taking tigason, I am extremely peely, and it is easier to get the excess skin off in a bath, than a shower...and I come out pretty smooth...Tatiana put me on to that one...

But the mention of less baths fascinates me, because my mother was told from Day One, not to put me in water at all...She had to wash me with cotton wool and olive oil...I think this happened for the first 2 years or so, because my skin was so fragile...like tissue paper she said...

I recently found out that I never sat up OR wore any clothes until I was 2 years old. She said 'you were treated, and laid down on a sheet, with a nappy under you'.

I am assuming that the 'non water' advice back in those days (1964-66) was because when the skin is too soft, it emaciates (kind of rots...goes too soft, and breeds bacteria)...Especially in EHK, because we are prone to blistering and infection.

But as Chandra said, we are all different, I can understand her finding baths soothing, as they are for me, especially in winter, but I only have one once a week or so now...showers every day...Just don't have the time, during week days.

Whatever works for someone SIMPLY WORKS... there are never any right or wrongs in the Ichthyosis business, as you all know...

Keep on experimenting...to find the right treatment in yours and your children's lives...

LOTS OF LOVE
PAULINE

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