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#13709 - 03/28/07 02:20 AM Signs at the time of birth
invisible Offline

Registered: 03/05/05
Posts: 53
My son looked very dry at the time of birth and for a few days, but not as two months old he is very active and doesn't shows any sign of extreme dryness ... even though he is a little dry as some other kids do ....could any one share their experience with kids having kids with IV ...

#13710 - 03/28/07 03:33 AM Re: Signs at the time of birth
Promiseland_dup1 Offline

Registered: 02/13/03
Posts: 536
The weather has a lot to do with the build up of scales or lack thereof for IV. In fact, it can be deterministic. Where do you live?

If your child has IV but you live in hot and humid climate, the sweating would keep the scales at bay.

If you live someplace with harsh winters, and your child has minimal symptoms, I would say that is a good sign.
Don't ever lose hope when
there is a promised land, and "sweat" dreams

#13711 - 03/28/07 11:26 PM Re: Signs at the time of birth
new Offline

Registered: 02/21/07
Posts: 5
Loc: Toronto, ON Canada

It seems like our boys are about the same age. Mine is now just 7 weeks, he did show dryness at birth, and was a bit red in his face as well, although they told me at the hospital it was the red blood cells breaking down, other than that his skin looked perfect. He started with the peeling process after the 5th day. He looks really great now. I'm not sure if it is because of the way I'm treating his skin or not. I'm just having troubles with his scalp, but I'm confused if it could be partly cradle cap, because it is kind of crusty. I keep it under control, by brushing his scalp with a soft baby brush, and applying cradle cap cream on it, and washing it with a creamy soap-free baby shampoo. But it doesnít seem to go away. It is only the top and back section of his head, the sides seems to be fine.

I'm also very curious of what will happen if I don't apply the aqueous cream regularly. His skin looks so beautiful and soft at this time, and I'm looking at his skin with "magnifying" eyes! I wonder if I don't do the daily creaming, that his skin will go from good to bad, or if it will stay the same. I've only been giving him a bath every second day.

I did notice this morning that his back seems dry after I gave him a bath and that there is a little peeling going on, but not much. I apply Glaxoll Base with a little added glycerine and then put some Aquaphor on top of it, only when I bathe him every second day, in between the days I just put a little Vaseline Intensive care, or aqueous cream on him, that is it. Overall, it looks like his skin gets better each day. We have the furnace going all the time in the house, dry air.

I get very anxious when I see signs of the dryness, and start to worry all over again.

I think what makes me most worried, is that when you look up x-link ichthyosis, they show you what it looks like at three months of age, but they don't say whether it's been treated or not, and what a babyís skin looks like when it is treated and with what the baby's skin has been treated with. Especially when you take your baby to the dermatologist, they will have no idea how bad your baby has the condition, because you keep his skin looking healthy everyday. The dermatologist that I saw said that his skin would be the same as my brother because the genetic link or deletion is the same, and also said that it looks very mild, bearing in mind that the derm. saw him at three weeks old and he was at his worse peeling then, dry skin coming off. His legs and arms were the worst.

From what my mom told me, my brotherís skin was 100 times worse and peeling in scales all the time from birth, and his skin looked so different from my baby's then.
So I donít think that the dr. really knew..

What I would (very much) like to find out from the genetic testing is if they can tell me how severe his condition is?

I would love to hear what your experiences are with your baby. Do you use any creams/treatments on him? Whatís the climate like youíre living in.



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