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#10288 - 11/10/04 10:41 PM removing scalp scales
hiltyler Offline
Junior Member

Registered: 11/09/04
Posts: 2
Loc: Brownwood, TX, USA
Hi! I am new to this board and relatively new to ichthyosis (x-linked). My father, my sister's son, and my son all have ichthyosis x-linked (ixl). My son was diagnosed while I was still pregnant with him (via amneo). He is now 18 months old and does not sit still long enough for anything! He has a relatively mild form. No scales what so ever on his body except his scalp. He has a lot of dryness on his back, tummy, and legs but no scales except on his head! Thank the good Lord for that. I am having a problem with removing the scales effectively. He does have a lot of hair (not too thick) but the scales are noticably getting worse. I have used the baby oil soakings and the mineral oil soakings and that is all. My pediatrician told me to use Elidel! Yeah right, that did not work! Most of the doctors around here do not even know what ichthyosis is let alone how to treat it. Any suggestions? I have heard of some kind of shampoo that will loosen the scales and help keep them to a minimum? Anyone out there know of the name?? Any advise is welcome. Thanks so much! This is a great site!

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Hilary
Mommy of 2
Brownwood, TX

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#10289 - 11/10/04 11:45 PM Re: removing scalp scales
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
Hello, Welcome to the board!! My 12 yr. old son has EHK and my current favorite shampoo is Paul Mitchell's Tea Tree Shampoo. Some others I have had good results with are Neutrogena t-gel, plain old Head and Shoulders,P&S shampoo and they also make an oil you use as an overnight soak. I am having a memory lapse on the others but there are lots of other posts to look through that may have more suggestions.
Dee
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Dee

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#10290 - 11/11/04 05:44 PM Re: removing scalp scales
jana Offline
Member

Registered: 11/20/00
Posts: 23
Loc: Eva, Alabama 35621
Hi, I use Lac-hydrin on my daughters head 2-3 times a week at night and shampoo it out in the morning . I used it alot on my 15 yr old son's head when he was little and it helped keep the skin from building up and helped it come out better. When it is soft, I use a fine tooth comb to comb out the scales.It says its safe to use on babies and I never had a problem with my son or daughter.We have EHK ichthyosis so I don't know if it would work as good on X-linked or not. Hope the suggestion helps! Jana
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Jana Gourley

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#10291 - 11/12/04 01:12 AM Re: removing scalp scales
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Hi! My 5 year old and 10 month old sons both have x-linked. They both have scaling on the scalp. My 5 older boy has had it pretty thick at times until I started using Burt's Bees Feelin' Flaky shampoo. I use it about 3 times a week and I scrub the scalp with a very stiff brush with the shampoo - I don't have to de-scale anymore - I just brush his head every day (I keep his hair really, really short because of the scalp maintenance). The shampoo doesn't seem to do as well on my baby - but I still use it on him and use a stiff brush because it's better than it used to be. I have not tried the Paul Mitchell Tea Tree shampoo yet, but many people are recommending it. I am so happy to have found a shampoo that helps, though! The oil soaking and meticulous job of peeling off the scales with a fine comb is so time consuming. Keep trying things and reading the posts on this board. You will find so much incredibly helpful information - you will be able to teach your doctor!!! Good luck!

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*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#10292 - 11/12/04 06:50 PM Re: removing scalp scales
hiltyler Offline
Junior Member

Registered: 11/09/04
Posts: 2
Loc: Brownwood, TX, USA
I want to thank all of you who have replied to my post. I really appreciate it and will try some of the suggestions starting this weekend! I would love to be able to get a handle on this right now so that we can get into a good routine and prevent/manage some of the discomfort for my little boy! He hates for me to mess with his scalp as it is right now...but hopefully this will change. Thanks again! If anyone else has suggestions...please post them! TKS

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Hilary
Mommy of 2
Brownwood, TX
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Hilary
Mommy of 2
Brownwood, TX

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#10293 - 11/12/04 11:10 PM Re: removing scalp scales
Chelle Offline
Member

Registered: 10/10/04
Posts: 87
Loc: Pittsburgh, PA, USA
Another often ignored shampoo, which I like to use, is Neutrogena T-sal. It uses salicylic acid instead of tar, and is a clear golden color. The directions on the bottle say to use two or three times a week, but I've found I have to use it daily if I want really good results for my lamellar.

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#10294 - 11/19/04 02:07 PM Re: removing scalp scales
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
A lot of the time I did the childrens scalp when they were small while they slept on my lap. It was the only way to comb the scale out. My two year old is impossible..he runs away, screams and well, never holds still. His hair covers it and we just leave it until its very thick. If people make a comment (and I know they are just being petty etc) I tell them to mind their own buisness. With winter here, hats hide a lot anyway. When we do get him to fall asleep or hold still on the off chance, I find that the t-gel and head and shoulders (they even have a tear free formula) can help slow down the scale in between removal. Also right out of the tub we put lotion or vaseline on his scalp. If it contacts his hair and we need the hair to look clean I take him to the sink the next morning and wash the hair only with dish soap. It takes grease outa the way! LOL
They do this in hair salons too right before a process its called stripping the hair. Anyway, that makes it less stressful to remove the oil/grease. Just dont let it sit on the scalp and dry it out more.
Hope this helps. mY boys also have x linked

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