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#20420 - 04/27/06 10:08 PM Alternative to daily baths/showers
Jacqmari Offline
Member

Registered: 04/27/06
Posts: 5
Loc: Portland, OR, USA
My son has x-linked ichthyosis. He does not enjoy bathing and does not shower daily. This causes his skin to build up and become very scaly. I am wondering if there are any alternatives for managing his skin other than having him try to shower more often.

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#20421 - 05/02/06 05:57 AM Re: Alternative to daily baths/showers
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
It is not just a whim, an accident or a throw of the dice that your son does not enjoy a shower or bath. The exposure to water, like air conditioning, dries out the skin even more for Vulgaris and, I suppose, for X-link too. The drying effect is a palpable physical discomfit.

However, a very short shower and shampoo should be done daily for minimal hygeine(sp). Also, occasional soaking in a salt bath in lukewarm water tend to facilitate exfoliation too.
_________________________
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#20422 - 05/02/06 08:13 PM Re: Alternative to daily baths/showers
Evan's Mommy Offline
Member

Registered: 08/11/05
Posts: 165
Loc: Portland, ME 04106
How old is your son?

Our Evan is 10 months old with palmar plantar EHK. He has a daily bath with diluted bleach and lots of moisturizer post bath (aquaphor feet, curel - body). We do not wash his hair everyday but we do condition it with Neutragena Triple Moisture conditioner.
We also have a doctor prescribed pain management system in place. There is no doubt that his skin regimine causes pain (blisters, open sores, cracks). The rest of Evan's team (pediatrician, PT, OT) believes that the limited pain management that we use has had a VERY positive affect on him overall. He's 17 pounds and only slightly delayed (gross motor and communication). If you would like more information on his routine or have questions, please feel free to e-mail me kimmayone@juno.com.

Best wishes.
Kimbery

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#20423 - 05/02/06 09:58 PM Re: Alternative to daily baths/showers
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Quote:
Originally posted by Jacqmari:
My son has x-linked ichthyosis. He does not enjoy bathing and does not shower daily. This causes his skin to build up and become very scaly. I am wondering if there are any alternatives for managing his skin other than having him try to shower more often.


I shower my boys (both rxli) every 2 days, and once or twice a week, instead of a shower, they each take a sea salt bath soak for about 45 minutes. The sea salt helps reduce the scaling, and we lotion every day twice a day with Eucerin PLUS on the scaliest areas, Eucerin Calming cream on the rest, this seems to keep the scaling minimal, and their skin pretty comfortable. If you do some reading in the rxli area of this bb, you will find some really good hints, many have shared what they do to help with their boys' scaling and dryness. Take care, and good luck!
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#20424 - 05/03/06 10:23 PM Re: Alternative to daily baths/showers
Jacqmari Offline
Member

Registered: 04/27/06
Posts: 5
Loc: Portland, OR, USA
Thank you so much for all of your suggestions. My son is 13 so probably just starting the early teen rebellion stage. I will have to work on changing his view on the "water" issue. :=)

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#20425 - 10/17/06 08:39 PM Re: Alternative to daily baths/showers
harkawy Offline
Member

Registered: 10/13/06
Posts: 17
Loc: Lancaster, CA. USA
Jacqmari,

I am a 61 year old man and I have had rxli since birth. While growing up, I too used sea salts in my bath. I stopped using it when I turned 12. Salt is used to preserve meat. It is used to draw out moisture. Why would anyone want to dry out the skin more than it already is? As so many others on this forum has stated, I soak in warm to hot water (~100 to 102 degrees) for 15 minutes to an hour. While soaking, I gently use a "buff puff" (sponge with coarse cloth cover) to rub away the dead skin. When I have had enough, I blot down and then apply an exfolient lotion to my skin. In the past, I would "molt" twice a year and would have "normal" skin just after the molting. Normal skin cells live for about 14 days and they die and are sluffed off during a bath or shower. With rxli, the sluffing doesn't take place properly. Since this new regement, my skin has been "normal" for more than 5 months now and I couldn't be happier.

By the way, I use an 8 foot spa hot tub which does wonders for my arthritus and sciatia.

Tell you son that once the scales are off he will feel better but initially it will take about three to four weeks.
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Harvey

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#20426 - 11/05/06 02:43 PM Re: Alternative to daily baths/showers
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I know this is an old post, but the salt does exactly what we want, dries out and removes the built up skin, and when we use it as a rub (dry) on wet skin it exfoliates the scales. Then we lotion. With RXLI the skin adheres, when we bathe/shower, yes the skin absorbs the moisture and appears normal, but that does not remove the scale, it only temporarily hides the skin until it is ready to come off. Some people choose lactic acids instead of salt, they both remove the skin, just in a different way.

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#20427 - 05/02/07 04:27 AM Re: Alternative to daily baths/showers
GymRat Offline
Member

Registered: 01/08/06
Posts: 13
Loc: Santa Rosa, CA USA
I do the same thing Harkawy. I scrub off all the deal skin in the tub and then use an exfoliant lotion. I have to get into the tub about every week and a half. Longer than that and my skin drives me crazy. I use Keri Age Defy and Jergens has one, too, but I can't remember the name of it. I don't like any moisturizing soaps in the water because it just makes it that much harder to scrub off the dead skin. Having the skin dry out a bit makes it easier to scrub off that dead skin.

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#22812 - 10/10/08 08:47 AM Re: Alternative to daily baths/showers [Re: harkawy]
BRIANNA_TROXELL Offline
Member

Registered: 08/08/08
Posts: 48
Loc: WHITEHALL,PA
I was wondering the same thing of the sea salt baths, but I had another ? for you. My son is only 4 months old and he hasnt really developed any scales yet. He was also born in june and its only starting to get colder, but I was wondering when your bathing and rubbing off the skin does this hurt? I am so worried with the discomfort of my son.
Brianna
_________________________
BRIANNA TROXELL

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#23026 - 10/27/08 03:33 PM Re: Alternative to daily baths/showers [Re: BRIANNA_TROXELL]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
Brianna - I too was worried about the discomfort that rubbing off dead skin would cause our daughter. It wasn't until the scales began to build that we began to rub. I think this happened when she was about 9 months old and we simply bathed her daily in Balnium soya oil and rubbed the dead skin off with our hands! We still use this regime but on the tougher areas I use a exfoliating scrub mit (she's not that keen on this at times) and it does the trick. She's now 20 months.

Jx

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