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Forum
-> Vacation and Traveling
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amother
Lemon
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 Tue, Jun 06 2017, 6:29 pm
My mother offered to take my daughter who is suffering terribly from excema and longe term effects of steroids.
Is it helpful? Will it be very painful?
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amother
Bronze
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Tue, Jun 06 2017, 6:34 pm
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I can tell you what I do know from my experience. my sister and brother both have soriasis. its a lifelong skin condition. nirvana is by the dead sea. and they have all accomodations for this type of stuff there. being in the sun is the most healing for this type. I dont know about eczema. you would need to ask your skin doctor. before you do this. its expensive and something you would need to ask before. the least to help with this condition would be at least a month.
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amother
Black
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Tue, Jun 06 2017, 7:35 pm
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amother
Lemon
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Tue, Jun 06 2017, 8:33 pm
| amother wrote: | https://m.youtube.com/watch?v=VgAvoxY1I2g
Camp for frum kids with excema in Switzerland. |
Interesting! Is Switzerland specifically good for the skin?
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Miri7
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Tue, Jun 06 2017, 9:37 pm
I have eczema and you couldn't pay me money to dip a finger in the Dead Sea. It's would hurt sooo much.
I find that the ocean helps a LOT. I just found a recipe online for "sea spray" to mimic the ocean. I'm going to try it soon.
Maybe the mud treatments would help. It no way would I put a kid with eczema directly in the Dead Sea. It would feel like you're burning alive!!
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asmileaday
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Tue, Jun 06 2017, 10:27 pm
| Miri7 wrote: | I have eczema and you couldn't pay me money to dip a finger in the Dead Sea. It's would hurt sooo much.
I find that the ocean helps a LOT. I just found a recipe online for "sea spray" to mimic the ocean. I'm going to try it soon.
Maybe the mud treatments would help. It no way would I put a kid with eczema directly in the Dead Sea. It would feel like you're burning alive!! |
I'm not sure about the sea but I know people with eczema sit in special sun areas on top of the hotels. The sun is supposed to help.
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Blessing1
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Tue, Jun 06 2017, 10:28 pm
Please don't send an eczema child to the Dead Sea! It's torture & probably dangerous.
There's a group of families that go every summer to Switzerland with their kids & they come back literally itch free. The air there does wonders.
I've heard people also go to Arizona.
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ally
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Tue, Jun 06 2017, 10:30 pm
| Miri7 wrote: | I have eczema and you couldn't pay me money to dip a finger in the Dead Sea. It's would hurt sooo much.
I find that the ocean helps a LOT. I just found a recipe online for "sea spray" to mimic the ocean. I'm going to try it soon.
Maybe the mud treatments would help. It no way would I put a kid with eczema directly in the Dead Sea. It would feel like you're burning alive!! |
I think it's the air and sun that are healing.
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ra_mom
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Tue, Jun 06 2017, 10:58 pm
| amother wrote: | https://m.youtube.com/watch?v=VgAvoxY1I2g
Camp for frum kids with excema in Switzerland. |
Wow.
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amother
Coral
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Wed, Jun 07 2017, 12:31 am
There is a lot of information and a lot misinformation in these postings.
1. Eczema and steroid damage are two different conditions and need to be treated differently:
*Eczema benefits from sun exposure and is a natural internal condition that other things may help as well
*Steroid damage is exacerbated by sun exposure. Very bad idea to put a person with steroid damage into the sun. It will cause flaring.
2. Steroid damage is often misdiagnosed as eczema. While the condition BEGAN as eczema (or psoriasis or seborrhea), it many time converts to a new condition called Red Skin Syndrome. Getting the CORRECT diagnoses is vital. MOST doctors are not able to distinguish between the two, even "top" dermatologists.
3. Kumi Uri is the camp in Switzerland. The founders have gigantic hearts, but I have heard that many kids have cleared beautifully while there, due to steroid use, but when they come back, they develop that steroid damage, which doesn't appear right away. The good news is, they are reevaluating their protocol and toning down steroid use after learning about RSS, HOWEVER, they still no very little working knowledge about RSS and are still not carefule enough. Hopefully that will change. As for Swiss air for TRUE eczema, not RSS, it might be helpful, but be wary of any creams there.
4. For therapeutic skin clearing, sun exposure even in America works well. Just get the kid out in the sun every day, slowly increasing exposure by a few minutes daily. This is ONLY in the case of 100% eczema. Again, getting the right diagnosis is vital. (Even very little steroid use can be cause RSS at times due to different potencies and different types of skin.)
5. Don't just google RSS to see if your kid matches the pics: the condition has various stages and presentations, and only one who knows what to look for can help you determine if the condition is RSS.
6. RSS is a condition discovered by a dermatologist certified by the American Board of Dermatology. RSS was confirmed as a real condition by the National Eczema Association in 2015, though they still have little training in the condition.
The Skin Healing Gemach is your best bet for finding the right treatment for yourself or child. Totally free: 845.425.2773
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FranticFrummie
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Wed, Jun 07 2017, 6:41 am
| Miri7 wrote: | | I have eczema and you couldn't pay me money to dip a finger in the Dead Sea. It's would hurt sooo much. |
THIS. The sun is good, and you can get that anywhere in Israel. The Dead Sea is way too painful!
I went in when I had a few mosquito bites, and Aaaargh! The salt sucked the poison out of the bites and healed them, but it felt like burning needles burrowing under my skin. The pain lasted a good half hour before it went away.
I can't even imagine having an open sore.  There are warning signs at the beach that tell you not to shave or pluck anything on your skin for at least 3 days before going for a dip in the water. Life guards keep hoses of fresh water handy to rinse off anyone who is having a bad reaction - it's THAT intense.
Even the mud stings pretty much, but no where nearly as bad as the sea.
I have a pretty high pain tolerance, and I could rationalize the feelings. A child with painful skin would NOT be able to handle it without screaming bloody murder.
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amother
Lemon
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Wed, Jun 07 2017, 6:50 am
Thanks everyone. That was my gut feeling too.
And thanks to the poster who wrote the very informative post where she mentioned the skin gemach! I had no idea there was such a thing and we've been groping in the dark now!
Yes/ it is tsw ( or topical steroid withdrawal) my daughter has been on too many steroids and since we've stopped two months ago it's been sheer agony for her. She looks like a red indian from head to toe. She is in so much burning no itching pIn. Problem is, derm and allergist only want to give her more steroids... and she's only 3 years old!
I will contact the skin gemach.
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reality mom
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Wed, Jun 07 2017, 6:56 am
Lemon Amother,
How do you know if what your daughter is experiencing now is TSW and not untreated eczema? Asking because my daughter is going through the same.
About the skin gemach, what resources do they provide?
My daughter went to the Dead Sea two months ago. She was there just for a day so she didnt see any results, but let me tell you, IT HURT LIKE HELL. She wouldn't do it again. (The water part). Most people who go for healing sit in the sun. The water itself is too intolerable.
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amother
Coral
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Wed, Jun 07 2017, 7:39 am
RSS or TSW (it is called by both names, though the derm that discovered it calls it RSS), has clear signs.
Eczema is NEVER bright red, covering large areas of the body. It doesn't creep, doesn't burn, and doesn't really have flaking, which RSS does at various parts of the cycle.
RSS is caused through the steroids artificially shutting down blood vessels (vasoconstriction.) That is why the rash disappears when using. However, those blood vessels are supposed to be open, and when the steroids are stopped (or stop working!) then the blood vessels hyper dilate and send out a huge rush of blood. The person looks like a vat of boiling water was dumped over them.
That big flare up usually happens about three months after stopping steroids, but can happen earlier or later as well.
The body has to learn how to behave again.
Skin Healing Gemach has tons of information and comfort techniques. They are in direct contact with Dr. Rapaport. He even came down to Monsey and spoke to a crowd at a symposium sponsored by Supreme Health.
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amother
Coral
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Wed, Jun 07 2017, 7:50 am
Resources the Skin Healing Gemach provides:
1. Information about the condition: History, the scientific process, how to diagnose.
2. Comfort techniques
3. Documentation to share with doctors and family.
4. Help finding the right doctor or training in your doctor.
5. What NOT to do in regards to the condition.
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FranticFrummie
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Wed, Jun 07 2017, 7:54 am
re: what coral amother said.
Swimming in a pool will help. The cold water will temporarily constrict the blood vessels until they can learn how to behave properly again. The chlorine in the pool will help disinfect any breaks in the skin.
Just make sure the pool manager knows in advance that your child's condition is NOT contagious. I'd hate for the child to be embarrassed and asked to leave the pool.
OP, sorry if I missed this, but your child has been to an allergist, right? I've seen kids taken off of wheat and dairy, with huge improvements. It doesn't work for all eczema cases, but it works for a lot of them.
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amother
Coral
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Wed, Jun 07 2017, 8:22 am
The problem with the pool is that most people with TSW/RSS have skin that is too sensitive to cold water exposure. It can cause unbearable pain. If they can handle it, fine.
Another thing: TSW/RSS is not affected by dietary changes, only true eczema. Again, right diagnosis is vital!
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amother
Lemon
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Wed, Jun 07 2017, 8:38 am
What coral said.
My daughter is experiencing the redness all over her face neck legs and hands. Flaking like crazy- even her ears and eyelids. She looks more like a burn victim than a excema case, which is what she stArted out with. There are great Facebook groups as well.
Frantic Frumit, of course I took my daughter to an allergist. She came up slightly allergic to environmental dust and mold and soy. We removed from her diet, put in air purifiers.... giving her probiotics... nothing is helping.
Rss comes with flare ups and then calms down to the skin flaking stage... then flares up again angry red and burning. It looks very different from atopic dermatitis or excema.
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amother
Black
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Wed, Jun 07 2017, 12:06 pm
I'm the amother who posted about the camp in Switzerland. I know someone who went with her daughter who had debilitating eczema (think: her entire body covered in the disorder, bleeding and raw and infected in most areas). By the last day of camp, it was almost gone. Upon her return to her home country, some of the excema did come back, but at much lesser severity.
I do not know what makes Switzerland a place of healing, but I believe that there is something in that environment that works, besides for the treatment regimen prescribed during the camp (standard protocol eczema techniques: frequent moisturizing, two layer pajamas following moisturizing, one pj damp; bleach baths, and more).
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amother
Pink
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Wed, Jun 07 2017, 12:14 pm
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I went into the dead sea up to my calves several hours after shaving my legs and the pain was pretty bad. I can only imagine the torture it would cause my son, who is always scratching and red and blotchy all over his legs. Which is not to say it wouldn't ultimately be helpful. Going in the ocean helps him even though he says it stings a bit. But how could you do that to a child? Yikes!!
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