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#25359 - 11/05/09 08:37 PM Scaly Head
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
I am new at this. My daughter Kilah has Lamellar Ichthyosis. The skin on her head is thick and scaly and is held on by her hair. Does anyone have any ideas for getting it to come off. I have tried all kinds of different shampoos, Prel, Head and Shoulders, T-Sal, and now I am using Neutragena body wash oil.
_________________________
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#25373 - 11/07/09 06:49 PM Re: Scaly Head [Re: Kilah'sMom]
SusieL Offline
Member

Registered: 10/17/03
Posts: 51
Loc: Raleigh, NC
2 of my 3 children have LI, and we deal with the scaly scalp issue all of the time. My children's dermatologist gave them a prescription for DermaSmoothe FS. It is an oil that I put on their scalp and then put a plastic shower cap over it to keep the air out (and the oil in) and a wave cap over that (like a thick pantyhose material) to keep the showercap from slipping off. The wave cap can be purchased at a beauty supply store for about a buck. We do this at night before bed, they sleep in it, and in the morning they sit in the tub. I shampoo them twice to get the oil out and use a metal cat/dog flea comb (from the pet store) to comb out the scale. The freshly exposed scalp will be sensitive, so you want to wash first as water touching the exposed scalp after combing will sting a bit. (If you give them Motrin 30 minutes before getting in the tub that might help with the sting.) The oil softens and loosens the scale so it comes off the scalp and slips off the hair easily.

You will be surprised how much nicer their hair lays after doing this treatment. My son is 6 and has short hair. He tolerates this process well. My 3 year old daughter doesn't. I keep her hair shorter, but it is naturally curly and tangles a bit in the process. Also because of her age she hates this process and whines through the whole thing. She takes a lot of patience and coaxing. Expect to spend about 30 min - 1 hour combing, depending on how cooperative your daughter is.

You could try the same process with olive oil. I haven't tried it, but I've heard it works too.

I hope this helps. I love how nice they look afterward, and I know it's more comfortable for them, I imagine it helps keep them cooler being able to exhaust heat from their scalp easier too. I'm actually planning on doing their caps tonight myself... good luck!
_________________________
Susie

Daughter, Emma born 9/2001 -unaffected
Son, Andrej born 8/2003 - has Lamellar Ichthyosis
Daughter, Tori born 3/2006 - has Lamellar Ichthyosis

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#25377 - 11/08/09 02:07 AM Re: Scaly Head [Re: SusieL]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Should I do this for my 6 month old son? I have been doing the oil on the head 30 min. prior to the bath time but it's still not quite good enough. His scalp scales up pretty thick.
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My name is Candace. My son, kenny was born May 19, 2009 diagnosed with Lamellar Ichthyosis. My daughter Chloe was born June 4, 2011 unaffected.

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#25381 - 11/08/09 04:58 PM Re: Scaly Head [Re: cschaap]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
Thank you, I will ask her dermatologist about the DermaSmoothe FS. I have been using Eucerin body wash oil on her body and it seems to be doing really good for her skin.
_________________________
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#25387 - 11/08/09 10:09 PM Re: Scaly Head [Re: Kilah'sMom]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
This time last year we were having such a tough time with our little girls scalp! We just couldn't get on top of then and she jsut would not tolerate any combing etc (she was just under 2 yrs old then so I'm sure you can imagine the tantrums lol!) However, we discovered t-gel for dry hair (it's important you note that it's for dry hair!!!) This works wonders! We tried various t-gels but this one was the only one that helps us keep on top of things! As soon as she gets in the tub I'll wet her hair and lather it up then leave it while she plays for half an hour or so then rinse then start the combing through. The scales have softened and come away relatively easily - depending upon her level of co-operation of course! We tend to make games out of getting the scales off. She calls it her fairy dust!

Good luck

J x

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#25392 - 11/08/09 11:58 PM Re: Scaly Head [Re: BritMum]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
Do I have to ask her dermatologist for t-gel for dry hair or can you get it over the counter.
_________________________
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#25400 - 11/10/09 03:08 PM Re: Scaly Head [Re: Kilah'sMom]
BritMum Offline
Member

Registered: 07/25/08
Posts: 226
Loc: UK
We can buy it in our supermarkets over here so I'm sure you won't need a script for it. Only costs a few pounds too! If you can't find any and you want to try it, PM me and I'll send you some if you want.

J x

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#25411 - 11/11/09 02:13 PM Re: Scaly Head [Re: BritMum]
scotsmum Offline
Member

Registered: 08/25/07
Posts: 88
Loc: scotland, uk
Hi, i have had some recent success with my sons scaly scalp. I decided one day to wash his hair with cream that I use on his skin and noticed a major improvement in his scalp condition. I used it after thinking about how his scalp is scaly but also really, really dry and how shampoo just seems to dry it more which was not helping at all, and how his scalp is sooo itchy, he scratches so much it bleeds sometimes. I also remembered that a long time ago, when i had some eczema due to dry skin, a doc telling me that you can wash with a moisturiser so thought it might help.
I havent tried many 'regular' ie not babies, shampoos as my son is so intolerant of rinsing and issue of it getting in his eyes. It is only first week of me trying new regime though so will see how it goes.

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