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#23865 - 02/16/09 05:33 PM How many kids do you have with EHK?
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Ok, so carlos and I have decided to give TJ a younger sibling. most of you won't understand or think we are crazy considering all the problems TJ has that go along with him having Down Syndrome. (there's not really a risk of another baby with it since it was just something that happened)

But we decided to try for another. I wanted to know how many children you have with ehk? OR how many siblings you have with it?
Personally, I've always believed 2 out of the 3 kids I want will have it and hubby and I are completely fine with it.
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24038 - 03/21/09 04:49 PM Re: How many kids do you have with EHK? [Re: Cindie]
luckelizard Offline
Member

Registered: 02/26/03
Posts: 190
Loc: Corpus Christi, TX, USA
My mom has it.. She gave it to me.. Neither one of my two kids have it..

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#24063 - 03/26/09 02:29 AM Re: How many kids do you have with EHK? [Re: luckelizard]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Ahhh, Thanks! Maybe we can meet up?! We live in Hemet, Ca. which is about 2hrs from sandiego. It would be me My son my husband and my mother. (so 3ppl with it.)

Cindie
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24088 - 03/31/09 11:35 AM Re: How many kids do you have with EHK? [Re: Cindie]
GeenasMom Offline
Member

Registered: 09/24/04
Posts: 9
Loc: Annapolis, MD
My grandfather passed it to my mother and 1 of her sisters. She in turn gave it to my older brother, and me, leaving my middle sister without it. I married and had two children, neither of which has it.

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#24257 - 04/24/09 08:58 PM Re: How many kids do you have with EHK? [Re: GeenasMom]
kmotto2002 Offline
Member

Registered: 10/29/08
Posts: 32
Loc: Wisconsin
I'm the oddman out then. I have NO history of it in my family whatsoever. I was told that with each pregnancy that there is a 50/50 chance of passing the disorder down to your child. We have medical statistics to back that up. Obviously that didn't stop my husband and I, as we went on to have 3 kids (1 girl and 2 boys) and they were born perfectly healthy with perfect skin.

Kelly

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#24270 - 04/28/09 09:03 AM Re: How many kids do you have with EHK? [Re: kmotto2002]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Kelly - Consider yourself lucky, then. We have 3 birth children and all 3 are affected.

Cindie - I posted on the EHK thread, and I'll flat out tell you I think you're an idiot to have one now. Not that having another child is a problem, it is more about how closely you're spacing (which is hard enough - my first two are 15mo apart, one affected) COMBINED with the medical needs of the first one and the high chance of medical needs of the second one.

You're at the easy stage. Babies nap. Babies don't run out in the street. Babies don't throw tantrums or poke their siblings.

Not to mention, 6 months ago, you posted all over this board about your financial problems. You just racked up probably a half million or more in medical debt. How exactly do you plan to pay for another child right now?

You're 22, aren't you? It isn't like the biological clock is ticking down. Give yourself some time between the kids. Enjoy the first one. A whole new dynamic emerges once you add siblings.

Good luck.
_________________________
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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#24307 - 04/30/09 06:16 PM Re: How many kids do you have with EHK? [Re: Hearsay]
Cindie Offline
Member

Registered: 10/01/08
Posts: 97
Loc: Riverside County, Ca.
Jennifer~ Thanks for your reply. smile I sent you a private message.

I was mainly just curious to see how many affected children people had. smile
_________________________
Wife to Carlos and Mommie to TJ, preemie born 1 mo early 8/14/08 with EHK, Down Syndrome, and a BEAUTIFUL personality!

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#24441 - 05/15/09 09:07 AM Re: How many kids do you have with EHK? [Re: Cindie]
Lperez520 Offline
Member

Registered: 05/10/07
Posts: 72
Loc: Brooklyn, NY, NYC
I AM THE ONLY ONE IN MY FAMILY TO HAVE EHK MY PARENTS NOR MY YOUNGER SISTER DO NOT HAVE IT I HAVE A 2 YEAR OLD AND SHE DOESNT HAVE IT EITHER..ME AND MY HUSBAND WANT TO HAVE ANOTHER BABY BUT HONESTLY WE ARE SCARED HE OR SHE MIGHT GET EHK..BUT MY FIRST BORN 2 YEAR OLD WAS BORN PERFECTLY HEALTHY WITH NO EHK

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#24456 - 05/18/09 08:55 AM Re: How many kids do you have with EHK? [Re: Lperez520]
melangelmusic Offline
Member

Registered: 08/08/08
Posts: 42
Loc: UK
Originally Posted By: Lperez520
I AM THE ONLY ONE IN MY FAMILY TO HAVE EHK MY PARENTS NOR MY YOUNGER SISTER DO NOT HAVE IT I HAVE A 2 YEAR OLD AND SHE DOESNT HAVE IT EITHER..ME AND MY HUSBAND WANT TO HAVE ANOTHER BABY BUT HONESTLY WE ARE SCARED HE OR SHE MIGHT GET EHK..BUT MY FIRST BORN 2 YEAR OLD WAS BORN PERFECTLY HEALTHY WITH NO EHK


Hi, my name is Melanie, I'm 30 years old, from the UK and also have EHK. I am currently expecting my first child (due Aug 1st). I posted a thread about this a while ago, but I think I'm going to just continue to have an open mind and take each day as it comes. However, I would love to keep in contact with other mother's or Mums to be with EHK so that I can find out how they coped. Feel free to send me a private message if you like.

Melanie
_________________________
My name is Melanie, I'm 32 years old and am from the UK. I have Bullous Ichthyosis (EHK)and have a baby daughter with Bullous/EHK also. I run the website below;
www.friends-of-ichthyosis.webs.com

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