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#25720 - 01/13/10 10:32 PM Really scaly scalp!
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I keep trying different things on my son's scalp and nothing seems to be working. He is almost 8 months old and I am currently using Derma Smooth. I have been putting it on his scalp at night and covering it with plastic wrap and then putting a cap on top of it. Then in the morning during his bath I use t-gel and try to comb some of the scales out but they are so thick, just the edges lift and the rest is very attached. When I try to get it off anyway, his head gets really red and will sometimes bleed. So, naturally I don't do that because I am sure it is painful for him and it just can't be good.
I do worry that it will keep building up, he will lose his hair, and I think it itches really bad. Is there more I am supposed to be doing? It seems like I try just about everything people suggest, without the successful results that they all seem to achieve.
I realize living in Indiana with these awful winters is not ideal for managing ichthyosis, but surely there is something out there that could help my little guy. Any suggestions would be greatly appreciated.
_________________________
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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#25721 - 01/13/10 11:59 PM Re: Really scaly scalp! [Re: cschaap]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
My daught is the same way, She is 13 months and it seems like i have tried everything. I have used t-gel, olive oil, aquaphor baby shampoo, and nothing seems to help. I have found that if I lube her head up with Aquaphor before bed and leave it on all night it is a little easier to comb out the next morning. I have never used Derma Smooth, what is that. Does it seem to help his skin. All we have ever used is Aquaphor.
_________________________
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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#25723 - 01/14/10 07:37 PM Re: Really scaly scalp! [Re: Kilah'sMom]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
Derma Smoothe is a topical oil that was recommended to me for his scalp. It is prescription, so my derm. had to call it in. A lot of people love it, so it may work for you. I like it ok, but I don't get nearly the results everyone else has gotten who has used it. My son may just be too young, because I was told to cover his head with plastic wrap and a cap, which I do, but inevitably he pulls it off! And you are supposed to do it overnight but I get nervous about him sleeping with plastic. So, that may be why it doesn't work as well.
What I have found that helps his skin, is putting pure dead sea salt in his bath water. He soaks in that for 20-30 min. It doesn't get all of the dead skin off but it does really help.
_________________________
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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#25724 - 01/14/10 10:02 PM Re: Really scaly scalp! [Re: cschaap]
KimNL Offline
Member

Registered: 07/31/08
Posts: 146
Loc: Holyrood, NL, Canada
Hi Candace
We recently started using dermasmoothe as well for Casey's scalp. It has improved some but not to a point I'd like to get it.
It is so frustrating and her hair is slow to come in. It is really the most troublesome for us. I guess we keep looking.
TGel did not help a whole lot for us. SO far, the best results we've gotten is from the dermasmoothe. We use it every day for 7 days then give her a break for a while.
Sorry I'm not more help frown
Kim
_________________________
Kim
Mom to Casey born Feb 17/08(?LI/CIE), Sara born Feb 18/06, and Kaitlyn born July 2/03
Casey has been tested positive for a genetic mutation in the ICHTHYIN gene (which is indicative of either LI or CIE)


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#25725 - 01/14/10 11:22 PM Re: Really scaly scalp! [Re: KimNL]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
When I soak Kilah's head I put one of her night cap things on and a shower cap and tie it in the back like a ponytail. it looks funny but it stayed on a while.
_________________________
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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#25726 - 01/15/10 04:28 AM Re: Really scaly scalp! [Re: Kilah'sMom]
cschaap Offline
Member

Registered: 07/06/09
Posts: 71
Loc: Crown Pt., Indiana
I will try that, thanks!
_________________________
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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#25793 - 01/24/10 05:55 AM Re: Really scaly scalp! [Re: cschaap]
ericalopez Offline
Member

Registered: 12/22/07
Posts: 38
Loc: san antonio, tx
I wash my daughter hair with tsal and leave it on for a couple of minutes while she plays and pick off what i can. I was using tea tree oil afterwards as a moisturizer and letting it sit awhile also then lightly rinsing leaving a little in. Recently however I bought a Matrix product called Biolage antidandruff treatment to use as a leave in and it really has helped with the itching and flaking and it leaves her hair shiny and soft. Hope this helps.
_________________________
erica lopez
daughter with LI-Lauren 11-12-07

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