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#11362 - 03/22/06 05:53 AM Scales on Nethertons head
Francesca Offline
Member

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
I am not using any shampoo on Lucia's head(thought it best to stay away from all soaps and chemicals - am I being too cautious with regards to this?), just the bath water which contains cottonseed oil and lavender oil. I had been advised by the derm not to use T-Gel/T-sal because of concerns about absorbing the chemicals in one so young(however she has had no experience with any patient with NS).

I have re-read previous 'scalp' posts and it seems that most mums use the Neutrogena products for all forms of ich - I also read that Burts Bees made one NS scalp drier.

It is taking about 2hrs every morning to remove the scales on her little scalp after the bath - could this job be made easier?

Should I just be using a shampoo?

Should I be applying something the night before to help the de-scale process?

She is really becoming very irritated with me picking at her tiny head for so long.

Thanks for any advice.

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#11363 - 03/22/06 01:19 PM Re: Scales on Nethertons head
LauraAnn Offline
Member

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
I love the Burt's Feelin' Flakey.
It is all natural.
It does a wonderful job of keeping the scales away. And it soothes itching. (it's got tea tree oil and peppermint oil).
Since I've used it my boys have not itched and they don't have scales. I have posted in another thread about our routine with this.
I hope you find something.
_________________________
- - - - - - - - -
*Laura
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

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#11364 - 03/22/06 03:22 PM Re: Scales on Nethertons head
BeepBeepinaJeep Offline
Member

Registered: 11/20/05
Posts: 1375
We use J&J moisturizing shampoo (pink kind) & then slather on a BUNCH of aquaphor & put a hat on top & let it soak. We always let his scales come off naturally. I know a lot of moms talk about getting off scales, but we were told by our dermatologist that doing that would create an entrance point for infection. (My Dad also agreed... we were never allowed to pick at anything when we were growing up) I love burt's bees stuff... you'll love the way that shampoo smells. I would think it would be safer than the medicine in the neutrogena. I get eczema on my scalp & use H&S sensitive & it helps. (I know it's mild b/c sometimes I can't use soaps.) With scales on his scalp, people just think Charles Ethan has cradle cap [img]http://www.ichthyosis.com/ubb/wink.gif[/img] lol Since that's the place his scales are most noticed by random people, I just don't worry about it for now. When he's older & he cares, we may do more aggressive things.

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~*~*~*~*~*~*~
Erin Burke Edwards
Charles Ethan's mom
http://www.babyhomepages.net/beepbeepinajeep/

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#11365 - 03/22/06 03:43 PM Re: Scales on Nethertons head
thehodgees Offline
Member

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
We have used T-Gel on Ema but I worry about it getting into her eyes.
I asked my "all knowing" hairdresser about scalp products/shampoos and she said there really isn't anything for kids...The "No Tears" option does not have the same PH balance as adult shampoos so that it doesn't mess with the eyes. That is why baby shampoos don't moisturize the scalp...the PH needs to be different.
We have found that a lice comb works wonders for getting the flakes out. The scales we don't pick at...but just loosen in the bath. It is difficult with Ema because her hair is half-way down her back now. Very thin though...compared to her brother's at that age.
I find the scalp to be very frustrating!
Love,
Sarah (and Ema)
_________________________
***********
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

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#11366 - 03/22/06 05:26 PM Re: Scales on Nethertons head
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Our routine is (and it's worked pretty well so far, though the back of her head still peels a lot, sort of like if you let glue dry on your hand and then you peel it off), I put either Aquaphor or Vaseline on her head about half an hour before her bath. Then I can kind of see what needs to come off, and what was just dry and needed moisturizing. Then when she's in the bath, I use Johnson and Johnson baby shampoo on her head. You wouldn't think so, but it actually works well in getting those scales off. I wash her head generally twice with it, and I sort of massage her scalp with my fingertips, and for the most part, her head's clear when I take her out.

I might give that Burt's Feelin Flaky a try, but I have no idea where to get it! lol
_________________________
Courtney
Mom to Julia

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#11367 - 03/22/06 07:25 PM Re: Scales on Nethertons head
didi4nyc Offline
Member

Registered: 03/21/06
Posts: 168
Loc: ny
hi I am not a mom but i do have nethertons
when i was young (currently im 24) my family used alot of natural oils... like coconut oil or vaselines for dryer hair and scalp used alot by the african american community... they are great because of all the vitamins they have. My mom or my dad would take cotton and press it in and massage the scalp. THen they would gently with a fine comb take of some of the scales. After that they would wash my head with a little bit of tgel and re-mosterize with oil and just leave it on for the day. It was a greasy mess at first but my scaled obsorbed it quickly and it smelled pretty nice.

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#11368 - 03/22/06 08:56 PM Re: Scales on Nethertons head
jrmiss86 Offline
Member

Registered: 06/07/05
Posts: 378
Loc: Marlton, NJ, USA
I have found that a combination of Curell Ultra healing lotion and Elidel when needed works best for my sons head.
_________________________
Heather
Mom to:
Alex (xli and Kallmans - 2/3/05)
Liz (3/16/07)

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#11369 - 03/22/06 09:14 PM Re: Scales on Nethertons head
BraedensMom Offline
Member

Registered: 11/16/03
Posts: 55
Loc: Lincoln,Ne
We have tried just about every shampoo there is and I think the best one is the tea tree shampoo. We no longer have the big scales like when he was a baby. His head just looks really dry. If he had hair you wouldnt notice at all. I did use T-gel on him and rinsed his head in the kitchen sink with the sprayer that seemed to really loosen the scales.I havent used that for years. Now If his head is bad I just put Aquaphor on his head at night, most nights he will have them scratch off by morning. If its really bad I will shampoo him in the morning and that usually takes care of him for awhile.

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