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#12106 - 05/20/08 09:03 PM where to treat
Annie Offline
Member

Registered: 03/25/08
Posts: 16
Loc: Lansdowne, PA USA
Hi all,
I have a question about my 5 week old with presumptive XLI. His extensive and prolonged total body peeling has just finished and now we're seeing a bit of the pattern of his XLI. He definitely has scales on his lower legs and likely his forearms. So far the rest of him minimally involved.
Our current routine is a daily bath with Aveeno moisturizing soap with mild exfoliation with a washcloth then Aquaphor twice a day. This is going well - his skin looks and feels great.
My question is: should I be moisturizing his whole body or just the affected areas? What do you do?
Thanks!
Annie, mother of Tommy

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#12107 - 05/21/08 06:00 PM Re: where to treat
mspowell981 Offline
Member

Registered: 06/08/07
Posts: 32
Loc: jacksonville, fl usa
i use the aquaphor all over. but, i use aquaphor after her bath at night, then use a different moisturizer in the morning before getting dresses. right now we really like sween 24. do you *need* to use the aquaphor on the affected parts twice a day?

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#12108 - 05/22/08 03:13 PM Re: where to treat
Annie Offline
Member

Registered: 03/25/08
Posts: 16
Loc: Lansdowne, PA USA
To be honest, I haven't tried *not* doing it! His skin is so good right now I've been afraid to experiment. It sounds like everyone experiments so I need to get over it. Thank you for the information. I'll keep sween 24 in mind.

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#12109 - 05/23/08 04:52 PM Re: where to treat
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
My son has XLI too. When he was a new born, we covered his whole body. Looking back, I'm not sure if that was necassary. Just be careful of overheating with the summer months coming. I used to give him a cool bath, take him out and "lube" him up. Then stick him back in the cool bath because he was so hot. We also let him splash his feet in a cool sink, and got a kiddie pool (as he got older) for him to play in. Our car didn't have A/C (I know, unheard of!) and I would bring a wet towel to put on him.

Over the past 6 years (he's 9 now) his aquaphor needs have reduced. Now he just applies to hands, feet, knees (back of especially) and face. He actually develops a rash on his stomach and back if we lube him there.

If you don't see a need to apply it to his trunk, then give it a try. If it becomes dry and looks uncomfortable, just stick him back in the bath and reapply. [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Charmed
_________________________
I have a gifted 14 year old boy with X-Link Ichthyosis, Type I Diabetes and Bipolor Disorder.
I have a 7 year old girl who is uncanningly healthy
I have a spunky 1 year old who doesn't quite understand the word "No" yet.

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