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#25645 - 12/15/09 11:16 PM Having another baby.
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
My husband and I have been discusing haveing another baby. Our 1 year old daughter has lamellar ichthyosis. I have heard that there are genetic test that they can do while you are pregnant to determine if the baby will have ichthyosis. Has anyone had this done? What kind of test is it? When we had Kilah we had no idea that she had this. We were not prepared. The hospital I had her at had never had a baby born there with ich, nor had they ever heard of it. I would like to be prepared and at a hospital that knows something about it and how to handle it.
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Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#25706 - 01/08/10 06:48 AM Re: Having another baby. [Re: Kilah'sMom]
KyliesMommmy Offline
Member

Registered: 01/12/09
Posts: 29
Loc: NY
If you have a known mutation you can have a cvs test performed between 10- 13 weeks and the sample can then be tested for the known mutation.

I am currently pregnant and had the prenatal testing performed. We recently got back the results and our baby girl on the way is unaffected.

My husband and myself are carriers, before our daughter Kylie was born we had never even heard of ichthyosis. We don't know of any other family members from either family with ichthyosis. We are not related.

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-Brooke
Mom to:
Hailey 12/8/03 unaffected
Kylie 08/13/08 ARCI / Ichthyin Gene Mutation

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#25717 - 01/12/10 07:57 PM Re: Having another baby. [Re: KyliesMommmy]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
My oldest daughters name is Hailey also. Before we had Kilah we had never heard of it either. I am all the time reading about it.
_________________________
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#25718 - 01/12/10 09:09 PM Re: Having another baby. [Re: Kilah'sMom]
brandynsmum Offline
Member

Registered: 08/25/08
Posts: 269
Loc: Connecticut
I'm pretty sure an amnio will pick it up too. We also had no idea and Brandyn needed to be transferred an hour away to the childrens hospital because the hospital he was born at wasn't equiped with a level 3 NICU ( only special care level 2 nursery). There had been 3 cases of collodion babies in the past 10 years at the childrens hospital, including Brandyn. All the best smile
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My name is Morgan. My son Brandyn was born on 26th June, 2008 in Sydney, Australia as a collodion baby and has been diagnosed with lamellar ichthyosis.

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#25866 - 02/11/10 05:30 AM Re: Having another baby. [Re: brandynsmum]
KyliesMommmy Offline
Member

Registered: 01/12/09
Posts: 29
Loc: NY
Yes, an amnio can be done for genetic testing but the cvs test can be performed much sooner in the pregnancy.

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#26028 - 03/20/10 01:54 AM Re: Having another baby. [Re: KyliesMommmy]
Allie Offline
Member

Registered: 03/20/10
Posts: 18
Hello, I'm new to all of this! I was just wondering I have ichthyosis, not sure exactly what kind, but it's making me question even having children, because there is a 50/50 percent chance they could get it. I was wondering if you all have had this same thought?

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#26036 - 03/20/10 09:36 PM Re: Having another baby. [Re: Kilah'sMom]
Allie Offline
Member

Registered: 03/20/10
Posts: 18
Hello Kilah'sMom!

I was just wondering if any, you or your husband, has ichthyosis? I'm just wondering because I have ichthyosis and very mild case, but I'm a bit worried having childre because I don't want to pass this on.

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#26270 - 04/23/10 02:08 PM Re: Having another baby. [Re: Allie]
Kilah'sMom Offline
Member

Registered: 11/05/09
Posts: 18
Loc: Shawnee, Oklahoma USA
No neither one of us have it. And there is no history of it in our families.
_________________________
Jalena, Mom to Kilah born 11/29/08 as collodion baby, she has been diagnosed with Lamellar Ichthyosis.
Also mom to Hailey 4 years old-unaffected

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#26321 - 05/07/10 09:47 AM Re: Having another baby. [Re: Kilah'sMom]
Luckymum Offline
Member

Registered: 05/04/10
Posts: 29
Hi
I am new to this forum. I had baby no. 2 in January. Our first one was born in April 08 with nbCIE. As it is genetic and comes from my husband and my recessive genes, we have a one in four chnace of having a collodion baby with ich each time. As luck would have it our second baby was also born with the same condition and nbCIE. But they are both beautiful girls and we are used to looking after the skin with our first girl so we are ok with it. At least, in the end, we have to treat them exactly the same.
Cheers
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I have two daughters, both with nbCIE.

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