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#10524 - 06/03/05 02:35 AM Re: XLI and dry face
charmed7 Offline
Member

Registered: 03/07/04
Posts: 165
Loc: Hartford, CT
P.S. - Just noticed your in Southern California, read my post about the dry heat in Texas, maybe your son is sensitive to the dry-ness here, face and all.
_________________________
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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#10525 - 06/26/05 04:24 AM Re: XLI and dry face
threerxli Offline
Member

Registered: 01/14/03
Posts: 515
Loc: virginia
I am never going to be able to read all of these and catch up! SMILE LISA calm down, his skin will even out. It probably will not stay on his face. If I can make a guess, is it on his eyebrows and forehead? It is probably still normal newborn peeling, my oldest peeled so much the first few months. The area you live in may be dry, and it couldnt hurt to run a humidifier (just keep the water clean) A lot of doctors recommend cetaphil and we used aquaphor on all three boys faces..wait, only two..I think when my first was born, it was only prescription at that time. Anyway, he will peel, and have dry skin. He is probably fine, and it will most likely get better, not worse. Jordan lost an entire eyebrow..lol Funny thing though, in my job I see so many babies, and even the babies without x linked ich, have dry skin patches and flakeys worse than some of the babies with XLI. Go figure. Also, one more thing. Try to only spot wash your son right now. He doesnt need too many baths right now. Mostly clean the solied areas and the folds of the skin. (under the neck, creases etc).. Just lotion him up. I hope this helps. Right now I am sleep deprived myself. I am writing this at 12 AM, this is the only time I can get online lately!!!!

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#10526 - 06/26/05 05:21 AM Re: XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
Hi Darcie!!

I wondered where you'd gone! I haven't seen any postings from you in a long time.

Jonah's skin is MUCH better now. His face is pretty clear. His scalp is probably the worst now and he still has dry patches on his knees. I've been in contact with Dr. Cunningham via e-mail - I wondered about giving baths and she actually said every day, but I haven't been doing that - usually every 2 or 3 days. I've been using aquaphor still on his knees and shins, but I use Eucerin Calming Creme on the rest of him - that seems to be working pretty well.

You are right - he did peel most on his eyebrows and forehead.

You said you see so many babies in your job - may I ask what your job is??

Lisa

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#10527 - 06/26/05 05:28 AM Re: XLI and dry face
lisat Offline
Member

Registered: 01/05/05
Posts: 61
Loc: Encinitas, CA, USA
One more question for all of you Moms - Jonah has what we call "jimmy legs" - his legs sometimes quiver or shake. I can't tell if it's just when he's overstimulated or what. I read somewhere that this could happen in newborns because their nervous system is still underdeveloped but my first son didn't have this. Has anyone else seen this? Is it related to the XLI or just a normal newborn thing?

I took Jonah to work the other day and one of my coworkers was holding him and noticed his scaly scalp and asked about it. I had told her prior to his birth that he was going to have XLI and she commented that her nephew's scalp looked exactly the same when he was an infant. Then I mentioned the "jimmy legs" and she said her nephew also had that. Weird!! Of course, now she's wondering if he has XLI : )

Lisa

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