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#27531 - 04/04/11 02:06 AM Baby boy w/XLI and itchy scalp - advice?
LiloMA Offline

Registered: 05/09/10
Posts: 5
Loc: MA
Hello - my 8 month old has XLI and for the most part its been very minor so far. I think his scalp has been most affected and as a newborn he had really thick dead skin that I could scratch off and then he'd be fine for a while. Now he always seems to have super dry skin on his scalp, but it doesn't flake off so easily. It really bothers him and the poor little guy itches his head a lot and even will scratch it bloody here and there if we don't keep his nails super short. Other than put aquaphor on his head - which makes his hair all sticky I don't know what to do - would love some advice! Lilo

PS: We keep his baths to 2/week and typically don't wash his hair.

#27532 - 04/04/11 11:39 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: LiloMA]
Glori Offline


Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
When my daughter was born, she didn't inherit my skin but she did get cradle cap which is quite common. The doctor gave me a flexible, fairly soft vinyl brush and cradle cap shampoo and that's what I washed her scalp with about once or twice a week. It worked like magic! and even your local drugstore will have something for the treatment of cradle cap and I think I would dry that and see if it relieves his symptoms.

#27534 - 04/05/11 06:41 PM Re: Baby boy w/XLI and itchy scalp - advice? [Re: Glori]
ChristinaG Offline

Registered: 06/12/06
Posts: 66
Loc: Woodland Hills,CA
My 13 year old son has XLI and his scalp is always an issue. We have found that Denorex works well but he has to use it 3 or 4 times a week for best results. He will also latter it up, let it sit for a minute then comb though it with a fine tooth comb... hope this helps

#27536 - 04/06/11 01:08 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: ChristinaG]
MomofPrincesses Offline

Registered: 06/27/09
Posts: 254
Loc: Mobile, AL
We use Salex on my daugther's hair every other day and it helps to break it up and keep it moving. We also use a lactic acid solution that we put on every night, use a comb and just try to keep it loose!
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)

#27637 - 05/15/11 11:34 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: MomofPrincesses]
twinmum Offline

Registered: 10/22/10
Posts: 42
Loc: NSW, Australia
Harry has itching issues too... it wakes him up at night - I see him rubbing his head back and forth even in his sleep like he is itching the back of his head... and he scratches at it.

#27640 - 05/16/11 02:04 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: twinmum]
MonkeyMama Offline

Registered: 04/17/10
Posts: 44
Loc: Georgia
We use T-Sal shampoo on Cate every other day (lather, sit for 2-5 min, then rinse). She gets a 30-60 minute bath in baking soda and salt daily, plus either Hydroxizine or Zyrtec at bedtime. It doesn't completely curb the itching, but we've seen an improvement with this routine.
Mama to Cate (1/30/08), our little monkey.
Collodian Baby/Lamellar Ichthyosis

#27644 - 05/17/11 11:53 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: MonkeyMama]
scotsmum Offline

Registered: 08/25/07
Posts: 88
Loc: scotland, uk
Would say not to use a cradle cap shampoo as they can be very drying, the scaling from ich is not the same as cradle cap.

My son is CIE & has quite bad scaly & itchy scalp. I usually (if he'll let me!) put the cream I use on his body on his scalp twice weekly, about half an hour before his bath, then wash out. Scale definately less
Hope this helps

#27646 - 05/18/11 02:07 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: scotsmum]
kekonen Offline

Registered: 12/14/09
Posts: 58
We started using Dermasmoothe scalp oil about a month ago and it seems to really help with the scaling. It's supposed to suppress itching as well, so I'd ask your doctor about it. We put it on Annalie's scalp after her bath at night and then wash it out the next night. We've had pretty good results using is 2-3 times a week. It leaves her hair pretty greasy, but if you have time to wash it out in the morning it should still do some good.
Mom to Annalie born 7/17/09 (Mild Lamellar) & Hadley born 3/20/06

#27786 - 07/03/11 12:19 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: LiloMA]
clare Offline
New member

Registered: 06/20/11
Posts: 4
Hi i have 2 boys with XLI and had the same problem when they were babies(scratching till they bleed) they are now 6 and 3 and its not so bad but still have very dry scalps, i have tried lots of different shampoo and although some work for awhile the dry scalp always comes back. So if you find something that works please post as im ready to try something new....GOODLUCK
Max 6 XLI
Chalie 3 XLI
Molly 8

#27791 - 07/04/11 01:30 AM Re: Baby boy w/XLI and itchy scalp - advice? [Re: clare]
Sideshow_bob Offline


Registered: 02/11/09
Posts: 61
Loc: US, Midwest
We have had great luck lately using coconut oil (from the grocery store, straight out of the jar) on A's scalp. I put it on in the bath, let it sit awhile (sometimes with a shower cap on) and then I wash it out with an olive oil shampoo from the ethnic hair care section. Two shampoos and the oil is gone, her scalp is fabulous the next day, and her hair looks nice (she has very fine hair). We do this at least once a week and her scalp is doing well.
6 year old daughter with CIE (non-bullous)and a non-affected infant daughter.

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