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#16494 - 07/29/03 07:14 PM scales on scalp
AdamsDad Offline

Registered: 04/01/02
Posts: 42
Loc: Atlanta, GA USA
Okay, I know this has been on the BB before but I couldn't find it. Adam has some thickening scales on his scalp, especially on the sides and back. They are like long strings of thick dry skin. I was wondering if anyone has a good solution. I've tried T-Gel and T-Sal shampoo as well as rubbing oil on it and trying to comb them with a fine tooth comb but nothing is really helping. Any thoughts?

#16495 - 07/29/03 08:50 PM Re: scales on scalp
Solomon Rumicha Offline

Registered: 08/15/00
Posts: 49
Few weeks ago someone on this bulletin board posted about a Shampoo called Meted and I bought from Walmart and tried it on my son. It did excellent job removing heavy scales.
My son has Lamellar and worked for him. It doesn't hurt to try.
Good Luck !
solomon rumicha

#16496 - 07/29/03 11:36 PM Re: scales on scalp
pauline5 Offline

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
Hi Mark,

How have you been? I get those same long pieces in my scalp when it loosens somewhat...I find that the wetter my scalp gets then the easier it is to get out...Just plain old soaking in water..but this would be hard to do with Adam...

What about getting a hand held shower hose, and running it over Adam's head while you have him in the bath...

Another thought...find out if the lactic acids would not be too harsh on his scalp, and if it is ok....coat his scalp in it, and cover his head with a shower cap to see if it has a exfoliating/sweating it off affect...

These sound like silly ideas, but that is all I can think of myself....My scalp is absolutely caked in scale...but it is very had to needs to be extremely soft before you attempt to comb it out with a comb, because it rips our scalp raw if it is still attached...

My mum used to spend hours going through my scalp after it was washed...soaked...

Just remembered a shampoo I used to use when i was little....Called: PINETARSOL....Tar BASED I think...and was recommended to people who had psoriasis...

Hope is helps...
Love Pauline

#16497 - 07/30/03 03:29 AM Re: scales on scalp

My scalp is most easily cleared when it has been wet for a long period of time, like when it has been very hot and I keep my head wet by wearing a bandana that I constantly rewet to stay cool. Then I take the shower massage and pressure wash my scalp and all the softened scale washes out. As far as lubing up my scalp and wearing a shower cap or occluding it in some way I will not do that anymore. I used to do it as a child until I developed an infection from trapping bacteria in my scalp under the cream. The resulting infection permanently killed a patch of hair on my scalp that has never grown back and continually seems to slowly but surely get bigger. If you must put creams on his scalp do not cover it with something that won't let it breath, it may be alright for other forms of Ichthyosis but with EHK it can be a sure recipe for an infection. Use whatever adam is most comfortable with and try to wash every bit of it out when the scales have softened up. Once you get the scales thinned down, routine applications will keep it manageable with minimal risk of bacteria and infections.

#16498 - 08/05/03 08:10 PM Re: scales on scalp
Veronique Offline

Registered: 07/13/03
Posts: 24
Loc: Rheden, the netherlands
Hello Adams dad,

Karlijn also has those scales on her scalp. The dermatologist suggested lard. We tried and it worked very well. The first time we used it over the night, we hardly recognised her after rubbing it off gently the next morning. Only problem is: it is VERY greasy in the bed, and it doesn't smell very nice either. It takes quite some shampoo to get it off again. However we stopped using this, because we couldn't get the smell of her...
Now we use plain babyoil over the night (once or twice a week), rub it a little the next morning, comb with a fine comb and wash it out twice. It doesn't work just as well as lard, but it is a lot less messy

Maaike and Karlijn
Maaike and Karlijn

#16499 - 08/06/03 05:14 PM Re: scales on scalp
Chandra Offline

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I use P&S shampoo, and when the scales are thick on my scalp, I use the P&S scalp treatment. If use the shampoo at least every other day, it usually does the trick and it's not tar based and smells pretty good, which is why I like it.

The only time I have to use the scalp treatment is when I've been sick and haven't been able to wash my hair daily like I usually do. Then, I dump it on at night after showering & washing my hair with the shampoo, then put a showercap on my head and go to bed (thought I don't think I'll do that anymore in light of Keith's info). If I don't want to sleep with a showercap on, I wait 'til I'll be home all day. Then I shower, wash my hair with the shampoo, dump the liquid on and wear an old shirt so if it drips, it doesn't stink up anything. The scalp treatment is stinky, but not really unpleasant, just odd. After a minimum of 5-6 hours, I go back in the shower and wash my hair again with the shampoo and voila, my scalp is much better.

Getting Adam's scalp very very wet is important for the treatment to work. Plus, the stuff washes out much easier than I think lard would. One bottle of the scalp treatment lasts me up to a year, which is good, because it's $18! You can buy the treatment and shampoo at the pharmacy, you just usually have to ask for it as they typically keep it behind the counter. It's made by Baker/Cummins if they have to order it for you. The shampoo costs between $7-$8 and you really don't need that much shampoo, either. When my hair was really long, I still didn't need to use that much, maybe enough shampoo about the size of a nickel.

A fine toothed comb is a must to get all the loose scales off my hair afterwards.
I am female, and was born in 1972 with Lamellar Ichthyosis.

#16500 - 11/10/03 11:17 PM Re: scales on scalp

Dear Adam's Dad,
I origianlly posted a topic about my son's dry scalp. You can still find it in the "Mom's Group" area of the BB date back to 2000. Many people gave me good ideas. My son is now 3 years old and still gets dry scalp. Recently I have been applying bath oil on his scalp, letting it soak, and then using a lice comb (found in Wal_Mart on the aisle where they sell lice remedies) to comb out the scales. I have also found that shampooing every other day is best to prevent drying out of the scalp. Good luck and don't forget to check out the old message of mine. [img][/img]


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