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#7246 - 05/03/08 07:21 PM worried mother
BRIANNA Offline
Junior Member

Registered: 05/03/08
Posts: 4
Loc: WHITEHALL,PA,USA
Well, my name is Brianna and I am 21 years old and pregnant with my second baby boy due june 5th. My older son,Stephen 2 and a half, does not have XLI,but durring this pregnancy I found out through an amnio that my unborn child will have XLI. I was also tested to see if I carried the disorder,because NO ONE in my family mom or dad has had any problems reguarding skin. I guess I am just the lucky winner of this disorder in my family. I feel as if it is my fault....I feel hopless....and lost. I am very scared. I never has any problems with my health or the health of my family members so I don't know how to deal with this. Is there any chances of the amnio being wrong? Can my son come out healthy without XLI? Has that happened to anyone? I guess thats my first major question. I am still fighting the facts that my son will have a genetic disorder does anyone have any advice on how to cope with this?
thanks
Brianna

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#7247 - 05/03/08 10:47 PM Re: worried mother
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Welcome, Brianna. XLI is a tricky disorder that can get passed down for generations of women before reappearing suddenly in a boy child. You didn't cause it, and there was no way to know. It is very common for a grandfather or great grandfather to be affected but it was mistaken for dry skin or no one talked about it. If you ask around, you might find that you have some affected distant cousins.

It can be quite a shock to find out that your child will have some sort of disorder or disability. One advantage you have is that you have time to learn about it and be prepared before he is born. It gives you time to accept what he is. I am glad that you found the board now - you have time to read about it before he comes.

As you look around the board, you'll see that most of the kids with XLI have pretty normal lives. I hope that you find that comforting. Another advantage you have is that you already have a child, so you aren't going to go through the new parent learning curve this time.

I don't know if anyone had a wrong amniocentesis regarding XLI. I'm dealing with a different type with no prenatal testing available, so I can't speak from experience. One thing I do know about XLI is that if you had multiple affected kids, how severe it is can vary from one to the next.

Please, have a look around. Many of us respond to email as well as on the board. Click the little envelope button at the top of each post to get an email address.



------------------
Reticular Ichthyosiform Erythroderma with white spots.
Husband, Nathan - 5, Elliot - 2, all affected.
I also have an unaffected daughter and am pregnant, due Oct 12, 2008
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#7248 - 05/03/08 11:28 PM Re: worried mother
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I just wanted to drop in and give you some emotional support ((hugs)) I can understand how you feel. When I gave birth to my daughter 2 1/2 years ago, something was wrong with her skin, and by 3 months old she was diagnosed with Netherton's Syndrome. It's a recessive disorder, and no one in our family had it, so it came as an absolute shock. Even though it's one of the rarer and maybe more severe types of ichthyosis, my daughter has an incredibly normal life; and I'm sure as long as you give your son as much love and support as I know every mother has, he'll be fine. My daughter does not have the same type as what you're looking at, just to clarify. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] But I know the feeling of being taken by surprise!
_________________________
Courtney
Mom to Julia

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#7249 - 05/05/08 10:47 PM Re: worried mother
snowgrl Offline
Member

Registered: 02/12/08
Posts: 8
Loc: West Valley City, UT, USA
Hi Brianna, I am 33 and expecting my 4th child, third boy. My first son has XLI and I am worried about this baby. I did not have an amnio.

I should say though, that my son also has a fairly normal life. We live in an area with harsh winters and his skin does get flaky, especially on his scalp. I have also noticed that the scaling on the rest of his body seems to get worse every year. But, he is a happy 6 yr old. He jokes about his ichthyosis, rubbing his head and telling his friends that he is cool because he can make his head snow. We have just made sure that he knows that his skin is just a part of him and that he is great.

I would say that his XLI is more of a nuisance than anything else. I wish you the best of luck. Hopefully you have a great pediatrician and he/she can recommend a good dermatologist.

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