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#11295 - 03/15/06 11:59 PM Help!
lsteven Offline
Member

Registered: 03/08/06
Posts: 18
Loc: toledo, OH
Sorry, to be posting so much, but I have lots of quesitons! (hope u don't mind)The docs around here have no clue, kinda feel like a gunea pig sometimes!
Was wondering if anyone has any ideas on the aquaphore...can you put that on the face & hands? just wondering about her licking it...(if the ointment would harm her)
Also, anyone find anything as far as sunscreens that work?

Thanks, for all your help?

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#11296 - 03/17/06 05:17 PM Re: Help!
Laurensmom Offline
Member

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
Hi Sarah,

Your doctors are no different then anyones. They dont know Harlequin or ichthyosis for that matter and will probably not see it again. Use this board and then go back and let the docs know what you learned. Ours thankfully have been real receptive.

We also use acquaphor everywhere and were also told that it was safe. During the real teething times we and still today during sleep we use mits or old socks on her hands so that she not sucking it all off. We have tried other perscriptives on and off but so far she hasnt been real tolerant of them.

All the best,

Shannon

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#11297 - 03/17/06 05:59 PM Re: Help!
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Aquaphor at worst will give the kids oily/runny stools. Nothing to worry about, really. Grease 'em up.

As for sunscreen, I just used the baby sunblocks when we were in Florida or at the pool. It just took a lot of work to get it out of the skin later in the shower.

Get used to the doctors not knowing anything. Maybe 1 dermatologist in the city has actually dealt with ichthyosis before. If you're lucky. And even those that do know what it is only have limited advice.

Our dermatologist was trained by a FIRST board member, so we're pretty lucky, but even with that, we've been through a series of varyingly successful treatments. I'll list them so you can try them if you'd like:

* Tazorac - a topical steroid, probably not good on a baby, though.
* "Fluffy creme" - Velvachol base with 10% urea, 10% lactic acid, and 10% salicylic acid. Works well on LI patients, she says, but it didn't do squat for us.
* 40% salicylic acid in Velvachol - too strong. We mix it 50/50 with the St. Ives Apricot Radiance and get about 21% acid, plus scrubby bits. Works great, though!
* T-Sal hair shampoo - Head and Shoulders works just as well for much cheaper cost.
* Lacrilube eye ointment at night.
* Genteal eye ointment during the day
* 10ml syringe with a butterfly IV needle tube on the end. Cut the needle off and leave about 1/4 inch of tubing. Mix 50% hot water and 50% hydrogen peroxide, suck it into the syringe, then squirt in the ears to clean out blockages. Works great, but lots of tears because it is really loud and gets cold fast. Ask your pediatrician for the syringe and tube.
* tea tree oil shampoo. (Paul Mitchell is the best I've found. V05 is useless) Works great, but stings like mad if you get it in cracks or in the eyes. I wouldn't use it on a kid under age 3.
*Eucerin. Too goopy.
*Cetaphil. We love this stuff.
*showers, not baths. The bath does a nice job of getting the bottom half wet enough to get the skin off, but the top half suffers. Besides, it is much easier on your back if you're not leaning over a tub or a sink for a long time.
_________________________
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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#11298 - 03/18/06 01:21 AM Re: Help!
lsteven Offline
Member

Registered: 03/08/06
Posts: 18
Loc: toledo, OH
Thank so much for all the info. Who is your dermatologist, we don't live very far from columbus!!

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#11299 - 03/18/06 03:19 AM Re: Help!
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Joy Mosser, in Westerville.

Toledo's a bit of a hike from here. It took us almost 4 hours when we went to Detroit to get my daughter at the airport last year. It was about 3 1/2 to the Toledo Zoo. I live on the south side of Columbus, though.
_________________________
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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