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#11306 - 03/18/06 04:53 AM my baby girl
kyliesmom4 Offline
Junior Member

Registered: 03/17/06
Posts: 2
Loc: Vidor, Texas USA
Hi my name is Kelly and we live in Texas. My beautiful 4 year old baby girl Kylie has ichthyosis vulgaris(atleast this is what the doc says,he does not want to do any definitive tests just yet). She is a very special little girl. Her ich is worse on her legs, feet, arms, hands, and she has hyperlinear palms. She also is flaky everywhere on her body even her face. She has been seeing Dr. Levy at Texas Children's hospital which is great. He just started her on lachydrin 12% and when we put it on her she screams and says it burns. I was wondering if anyone knows of anyway to help with the burning? We also use Cetaphil cream. I have posted on here once before and I love this site..very informative. You guys are great!! Thanks, Kelly

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#11307 - 03/18/06 02:53 PM Re: my baby girl
rodkarbrown Offline
Member

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
Kelly:

Our 4 year old daughter does not tolerate lotions at all either. We have to use ointments only. We currently use Aquaphor mixed with a low dose of Protopic.

Kaylee has Netherton Syndrome.

Maybe try the Aquaphor and see if she likes that!!

Have a great day,
Karla
_________________________
Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

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#11308 - 03/18/06 04:54 PM Re: my baby girl
chopkins Offline
Member

Registered: 09/23/03
Posts: 18
Loc: Flemington, NJ US
Hi Kelly,

I have a 3.5 year old little girl who has LI. We use a generic 12% on her - however, we mix it with pure glycerin. This has worked well with us, in that the glycerin is a great moisturizer and it softens the skin and it also reduces the potency of the AHA a bit, but it still works.

Give this a shot, it may work on your little one. My daughter complains about the sting too when it is not mixed.

Carrie Hopkins

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#11309 - 03/19/06 04:43 AM Re: my baby girl
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
It probably does burn. Between the flakes, the skin can be awfully thin - sort of like paper cuts or scrapes all over. Most creams have some alcohol in them. My husband says the Cetaphil is one of the things that doesn't sting too much, compared to a lot of other creams he has tried. Lachydrin is lactic acid. It eats away at the dead skin on the surface and makes the skin thinner. No surprise that it burns her.

Maybe the concentration of acid is too high for her. You can mix a little with the Cetaphil - 50/50, 25/75 or 75/25 - and see what is effective and if that doesn't burn as much.

IV seems an odd diagnosis unless either you or her father have it, too.
_________________________
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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#11310 - 03/19/06 08:09 PM Re: my baby girl
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hi, Kelly. I have a almost four month old little guy with Lamellar ichthyosis. We too go to Dr. Levy in Houston. We are going for our second visit this July. Where exactly is Vidor? We live in Austin but have family in the Houston/Conroe area. Our son too is flaky all over. He has large brown scales on his entire body and even still has his membrane on parts of his body. His face does not have the large brown scales but appears more like sunburned skin (the peeling not the color). If you are ever in the area, let us know.
Tammy (Jared's mom)
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#11311 - 03/20/06 04:26 PM Re: my baby girl
hollie Offline
Member

Registered: 11/23/05
Posts: 31
Loc: Houston, TX
Kelly & Tammy-
We live in Houston and Dr. Levy is also Kate's doctor. We are really looking forward to seeing him again in May. Please let me know when you are in town next and we can try to get together.

You might have done this already, but I would call Dr. Levy's office and let them know that it is stinging her- see what they say and what they suggest.

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#11312 - 03/21/06 01:18 AM Re: my baby girl
jds Offline
Member

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hollie,
I will contact you closer to the time when we will be visiting Houston. I think we are going to stay at least an extra day and take the boys to the zoo. Tanner's 4 and hasn't been yet. Should be fun.
Tammy
_________________________
Tammy (caregiver)
******************
toddler son
lamellar ichthyosis

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#11313 - 03/23/06 10:28 PM Re: my baby girl
kyliesmom4 Offline
Junior Member

Registered: 03/17/06
Posts: 2
Loc: Vidor, Texas USA
Hi sorry it's taken me a while to get back with you guys. Hearsay, two different doctors have diagnosed her with this and neither her dad nor I have it. Do you think they are wrong?
Tammie and Hollie, Vidor is next to Beaumont and Orange. We are the ones that got hit by hurricane Rita straight on. Oh and I really like Dr. Levy. He did say that the lotion would burn just a little but she screamed like she was on fire or something.Thanks to everyone for your replys and I am going to try mixing it with the cetaphil.
Kelly

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