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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.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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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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#27492 - 03/17/11 09:20 AM Re: Alternative to daily baths/showers [Re: Jacqmari]
GF.Foodie Offline
New member

Registered: 03/17/11
Posts: 4
Loc: Colorado
Hi. I feel for your son and all children having to cope with Icthyosis problems. I am now in my 60's and have had Icthyosis Vulgaris and Eczema since I was born. Only 4 years ago was I finally diagnosed with Dermatitis Herpetaformis (DH), which I also had from birth. This has caused all sorts of internal complications in my bones, muscles, joints, skin, and many organs.

My mother was a good AMA-trained nurse who believed the new formula was better than breast milk, so that affected me deeply via the Celiac Disease/DH. My mother also made me soak my deep palm line splits (in winter in Pa) in a 50/50 chlorine bleach/water solution. Oh my! Did that dry me out so much, my palms would split even more! Not cool being in high school wearing cotton gloves with coal tar cream smeared all over my bloody palms! Today, I am extra-sensitive to ALL forms of chlorine! I shudder to think of going into any chlorinated water; I would rather die than drink chlorinated water; and I gag and nearly faint when I fill up a container in the sink to feed my gravity-drip water filter.

A genetic scientist was my mentor for 15 years, who advised me to add VITAMIN C/Ascorbic Acid powder to my bath water to neutralize the chlorine and fluoride in the water. You only need 1/2-1 teaspoon per tub! You can also buy Vitamin C shower "filters" online (more like a water "conditioner"), which work FANTASTIC! My skin and hair are so soft and silky smooth when I neutralize the water with Vitamin C. Also, by soaking or showering in the Vitamin C water, you are actually doing "Transdermal Therapy" by getting Vitamin C into the skin, which is acidic AND vitamin C is needed for skin, collagen, and body nutrition. I can no longer take vitamin C orally. I even add vitamin C to creams and lotions (like Jojoba oil for tanning and no burning!), and the external VITAMIN C IS EXFOLIATING MY SKIN, very naturally. And as a bonus, it has also faded my "liver"/aging spots on my face and body! Forget the expensive anti-aging lotions—just add vitamin C to any cream or lotion. I got the idea by reading their ingredients and realizing Vitamin C was the main common, active ingredient. It works well and has many benefits. I HAVE BEEN USING VITAMIN C TO NEUTRALIZE MY BATH WATER FOR 20+ YEARS!!! ANY comments that it does not work and that it makes hydrochloric acid...are wrong and right—they say it doesn't work because they have never tied it; and yes, it does make a WEAK acid that our skin desperately needs to shed and be healthy. It really does work. You have to try it to believe it. Some vitamin stores sell it in bulk powder so it's cheaper, and already in a useable form (for baths, pools, hot tubs, etc).

SCIENCE PROJECT FOR KIDS AND CURIOUS ADULTS: have them fill a bowl or sink or tub with water, have them smell the chlorine in the water, then have them use a watch to clock the TIME it takes for the Vitamin C to neutralize the chlorine after you stir it into the water! Really, it will suddenly turn "sweet" smelling within 5-10 SECONDS! It's like MAGIC! Your son will WANT to take his bath!

The best my skin has ever been living in the cold is when I used a hot tub for 2 years in the cold winter. I de-chlorinated the water with vitamin C, then added COPPER IONS (from SPADEPOT.com) instead of chlorine to kill the bacteria (one reason why water pipes in homes used to be made of copper!)...it WORKS! My tight muscle cramps relaxed, and my skin was so soft and smooth and hardly scaly. I could stay in there for 45 minutes and not come out looking like a prune, OR itching! Unfortunately, the house had mold in the walls, so I had to move into an apartment, so no more hot tub.

Also, I have had significant change in my dryness and scaling when I consume SUNFLOWER LECITHIN! BIG difference! I typically do not assimilate fats, oils and lipids, so ingesting LECITHIN, which breaks fats into microscopic molecules and makes them water soluble, and also makes them better able to be absorbed. I would recommend NOT using SOY lecithin, so common, as there are many detriments to soy (Google: "problems with soy"), AND soy is a strong thyroid depressant that unbalances the endocrine system and depletes the immune system even more. Besides, the natural UNfermented enzymes in UNfermented soy bind the nutrients in the meal that is eaten. Raymond Peat, PhD has spent more than 20 years researching both soy and coconut oil. Fermented soy is the only "safe" soy to eat, in moderation. NEVER EVER substitute soy for the MAIN protein in a child's diet!!!

Another remedy I use is an Infra-Red Sauna—fabulous for producing sweat and moving those toxins out of the body! Other times, my thyroid tends to be low in the winter, and when I get into a pain syndrome like Fibromyalgia, I jump into the sauna in my clothes, and come out 20-30 minutes later with a "normal" body temp and a HUGE reduction in pain. I use a sauna on average 4-5 times/week. I bought a fold-up one on ebay for less than $250. Have used it now for 3 years. That makes more than 600 uses.

The UV in the sun IS HEALING to most skin conditions. I am moving to Florida in the next year, and I can hardly wait! EVERY time I live where the UV always shines (<30 degrees N Latitude), my skin is nearly perfect and I have virtually NO pain! The UV in the sun is stored in our adrenals and is the basis for our immune system. Anyone with any allergies, easily gets sick, colds, fatigued, etc, might investigate ADRENAL FATIGUE. In fact, that is the name for a fantastic reader-friendly self-diagnostic book by Datis Kharrazian. A great self-diagnosis book for the endocrine system is "feeling fat, fuzzy, or frazzled by Richard Shames, MD.

If you seek relief and still adhere to eating the Standard American Diet, you will most likely be greatly disappointed in the lack of relief you will find in using drugs alone. Diet DOES make a huge difference in managing pain and symptoms. Most people with such a devastating disorder will find that they have at least one other and usually many other immune system disorders, as well. When you read the Adrenal Fatigue book, you will then understand just how the organs work in concert to provide homeostasis, and when that is unbalanced, problems appear. I am just now discovering that I am very sensitive to ALL "Stearates" and Citric Acid (NOT Ascorbic Acid) that is stuffed into most vitamins and drugs and foods! To improve any skin symptoms, especially if they are severe and devastatingly itching, it would behoove you to take the time and energy to do a food journal, pulse tests, etc, and isolate the offending foods/vitamins. Celiacs beware that the CASEIN protein in all dairy acts just like gluten in a celiac's gut! Very few people know about that latest research—they are out there eating GF pizzas/food with dairy! How do you know that you ONLY have ONE skin disorder? Most doctors don't bother trying to find anything beyond the most obvious ones, like they mis-diagnosed my DH for 60+ years! If you are miserable, and you have reached a plateau with your doctors, then go down a different rabbit hole and start over! Read, read, research!!! Deeply! Dare to go where no others have gone before, and read real person comments, like on this forum.

BTW, to stop an allergic reaction within 15-30 minutes: drink ALKA SELTZER GOLD (ONLY GOLD). At is core, an allergic reaction is an acidic reaction—taught to me by MD specialists 35 years ago. I used to use it very successfully when I was in my 30's-40's, and occasionally since then. I get very few allergic reactions now, as I am constantly assessing and reassessing my foods, as our body chemistry DOES change!

I realize that I have a more common form of Icthyosis, and that I also have other skin and internal disorders that I have described remedies for-- I hope some of the readers can find a clue or two to help whatever they have. We are unique individuals, and some remedies can be successfully used in cross-categories. I firmly believe from life experience, that most people have more than one disorder, and that the newest research shows that 82% of the population in the US has "some form of Gluten Intolerance"!!! 82%!!! Celiac Disease has been positively correlated with: Diabetes, Downs Syndrome, ADD-ADHD, and some Schizophrenia. It becomes a "neurotoxin", for goodness sake! Astute medical professionals are realizing that gluten also causes MOST of the inflammation in people that eventually leads to a slew of degenerative diseases and drug complications, which would be better managed by eliminating gluten instead of taking dangerous drugs that produce side effects. Gluten is so hidden in so many food derivatives (like "Natural Flavoring", MSG, etc), it has taken me 5 years to ascertain 95% of the gluten in my diet, and I am still discovering the remaining 5% that is reeking havoc in my life. I love watching PBS Masterpiece Theater's Hercules Poirot, Sherlock Holmes, and other detective series, because they condition my thinking to ALWAYS be aware and looking for the clues that reveal the PATTERNS that affect me. Good Detecting to you!





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#27494 - 03/17/11 06:36 PM Re: Alternative to daily baths/showers [Re: GF.Foodie]
GF.Foodie Offline
New member

Registered: 03/17/11
Posts: 4
Loc: Colorado
Oops! I got a little ahead of myself and put the wrong author for the book: "Adrenal Fatigue" is written by James L. Wilson, ND,DC,3 MS,2 PhD! He teaches doctors about the adrenals.

Datis Kharrazian is the author of another excellent book, "Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal." Mostly geared to diagnosing and understanding how to correct Hashimoto's Thyroiditis. I have read 8 thyroid books and one Adrenal book (all that our extensive library had on adrenals!) in the past 2 months--really fascinating as 4 of the books "specialized" in a particular category of thyroid effects, such as thyroid hormone can swing our mind up, down, and all over, Bi-Polar, Depressions, Hashimoto's, etc. As a result, I have put together a new profile for myself of the MANY effects that unbalanced thyroid can cause--more than most doctors understand, as they really don't have the time to research as I have. My AMA doctor was impressed and it helped her to go in a new direction with my Celiac complications.

BOTTOM LINE: DO investigate thyroid as being a possible exacerbation of Icthyosis...and I DO feel it is possible to "cure" it by correcting the BASIC nutrition/organ problem, with "alternative" means. Let me put it this way: when I live in a place like Phoenix or Florida, and I am out running around in the sun W/O sunscreen or sunglasses so my immune system/adrenals get charged up; and when I also go to a 90-100% RAW diet, THEN I DO have PERFECT SKIN! Sorry that some members on some parts of this forum are so negative. Drugs will not help them achieve any full remission. Only good, clean food and common sense.

I am moving to Florida this year! (:-D)!

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#28201 - 01/15/12 04:10 PM Re: Alternative to daily baths/showers [Re: LauraAnn]
Anonymous
Unregistered


Hi Laura, Have you tried Amlactin 12% lotion? i just started using it for my son and its making his scales disappear and skin is so soft! i have been using cetaphil lotion for the past 6 years but this works wonders!!

Anna

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#28289 - 03/22/12 08:46 AM Re: Alternative to daily baths/showers [Re: Jacqmari]
Chiranjeevi Offline
New member

Registered: 03/22/12
Posts: 4
Loc: India
If that is the case then The best thing to do is that you visit the dermatologist. he will give you some better treatment..

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