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#4579 - 02/19/08 07:57 PM acupuncture and massage
wonderboy Offline
Member

Registered: 07/02/06
Posts: 45
Loc: Orem, Utah USA
Just wonderbing if any of you who have Lamellar Ichthyosis have ever done any massage or acupunture.

We are looking into this as a regular treatment for our disabled LI son and don't know if it will bother him. (he's non-communicative!)

Let me know if any of you have any experience with this!?

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Kerry
Mason (3 years old) smile
Lamellar Ichthyosis
_________________________
Kerry
Mason (3 years old) smile
Lamellar Ichthyosis

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#4580 - 02/19/08 08:48 PM Re: acupuncture and massage
Francine Offline
Member

Registered: 07/29/05
Posts: 36
Loc: New Jersey, USA
I have Lamellar and I have gotten a few massages over the years. It does not bother me and usually feels quite good. I recommend having them use lotion as opposed to oil but that's just my personal preference. I have never tried accupunture but that's mainly because I'm scared of needles.

Good Luck!

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#4581 - 02/20/08 03:01 AM Re: acupuncture and massage
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
I can't see massage as a problem; I do them on my spouse and boys as needed, and they enjoy it. I don't know anything about acupuncture, though. I couldn't see my 5yo tolerating it, nor my 3 or 2yo sitting still for it. They are all different, though, so YMMV.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#4582 - 02/21/08 12:49 AM Re: acupuncture and massage
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
How would acupunture help?
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Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#4583 - 02/21/08 05:23 PM Re: acupuncture and massage
wonderboy Offline
Member

Registered: 07/02/06
Posts: 45
Loc: Orem, Utah USA
The acupuncture is for the Cerebral Palsy and other problems that he is having, nothing to do with his skin, but I just didn't know how effective it would be. I know that his skin is pretty tough when they try to get IV's in or blood work, so I was wondering if anyone had tried it and found success.

It's good to hear about the massage though. I figured he'd like it with as much as he is rubbed down with lotion anyway. Thanks for the lotion not oil tip.

------------------
Kerry
Mason (3 years old) smile
Lamellar Ichthyosis
_________________________
Kerry
Mason (3 years old) smile
Lamellar Ichthyosis

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#4584 - 02/21/08 06:55 PM Re: acupuncture and massage
Sarah Helen Offline
Member

Registered: 05/31/03
Posts: 383
Loc: Twin Cities, Probably North of...
I've had a few good massages in my life and many bad ones that hurt my skin.
The best thing to use, for me, is a milk bath product that is intended to add to bath water. The masseuse used it directly on my skin and it felt wonderful.
The important thing is for me to tell the masseuse that I can handle pressure but not rubbing.

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Sarah
35 with EHK
_________________________
Sarah & Son
EHK & ARCI
"Today is the Tomorrow that you worried about Yesterday, and all is well"

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#4585 - 02/29/08 04:04 AM Re: acupuncture and massage
Nikkster Offline
Member

Registered: 08/14/00
Posts: 83
Loc: Philadelphia
Hello,

I've had a massage once or twice before and everyone is right about the dryness. I think between the rubbing and oils, my skin was actually pretty dry afterwards. It feels great and relaxes the muscles, but I usually have to go straight home to take a shower so that I can re-apply my creams. Perhaps substituting cream/lotion for the oils would be a good idea.

Just my thoughts.

Nikkster

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