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asecretposter
LIF Adolescent
Member since 4/08 574 total posts
Name:
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Anyone know anything about Fragile X?
I just got a call from the OB. My bloods came back that I am in the "grey area" for Fragile X. I did not have this for my first PG, and to be honest, we never went to genetic counselling. The Dr is recommending that DH get bloods done to see if he shows for it as well.
Does anyone know anything about it? Any info would be helpful. Thanks
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Posted 7/18/08 11:03 AM  |
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snowflake08
Love my boys!!!
Member since 8/07 5148 total posts
Name:
Laura
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Re: Anyone know anything about Fragile X?
did you ask the dr. what it is? means?
did you google it?
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| Posted 7/18/08 11:08 AM |
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asecretposter
LIF Adolescent
Member since 4/08 574 total posts
Name:
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Re: Anyone know anything about Fragile X?
I'm sorry I should have clarified. I know what it is and what it is linked to. I suppose what I am asking is what the genetic couselling and testing involves, and if anyone had any first hand experiences they could share. I don't always trust google & webMD because they always paint the bleakest picture.
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| Posted 7/18/08 11:11 AM |
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snowflake08
Love my boys!!!
Member since 8/07 5148 total posts
Name:
Laura
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Re: Anyone know anything about Fragile X?
true
im sorry, im not familiar with it
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| Posted 7/18/08 11:16 AM |
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LuckySV
LIF Adult
Member since 10/05 4675 total posts
Name:
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Re: Anyone know anything about Fragile X?
Well, my dr recommended we go for genetic counseling b/c I tested positive as a carrier for 2 genetic disorders (CF and SMA). We chose not to go to counseling yet until we get the results of DH's bloodwork. Anyway, your doctor should give you the stats on how many people end up being carriers. FOr CF, my doctor said it's a 1 in 10,000 chance that anyone is a carrier for CF. That made me feel pretty good that DH was not a carrier (he's not). Also, even if DH is a carrier that's not a guarantee that the baby will be inflicted with the disorder. I would contact your Dr and try to get some more info.
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| Posted 7/18/08 11:17 AM |
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snowflake08
Love my boys!!!
Member since 8/07 5148 total posts
Name:
Laura
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Re: Anyone know anything about Fragile X?
Posted by npbride
Well, my dr recommended we go for genetic counseling b/c I tested positive as a carrier for 2 genetic disorders (CF and SMA). We chose not to go to counseling yet until we get the results of DH's bloodwork. Anyway, your doctor should give you the stats on how many people end up being carriers. FOr CF, my doctor said it's a 1 in 10,000 chance that anyone is a carrier for CF. That made me feel pretty good that DH was not a carrier (he's not). Also, even if DH is a carrier that's not a guarantee that the baby will be inflicted with the disorder. I would contact your Dr and try to get some more info.
can i ask? when you say you tested positive, what test was it?
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| Posted 7/18/08 11:18 AM |
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jprimrose
I love my little munchkins!
Member since 10/05 3939 total posts
Name:
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Re: Anyone know anything about Fragile X?
Posted by asecretposter
I'm sorry I should have clarified. I know what it is and what it is linked to. I suppose what I am asking is what the genetic couselling and testing involves, and if anyone had any first hand experiences they could share. I don't always trust google & webMD because they always paint the bleakest picture.
I really don't have experience with Fragile X, but I have been to genetic counseling with this pregnancy and my previous pregnancy. Basically you sit down with a genetic counselor and they review your numbers from your blood work and from your level II. They then talk with you about your family history. They help you better see your chances of having a baby with Downs Syndrome, Trisonomy 13/18 (?), Fragile X and Spina Bifida. After this you can then decide if it would be in your best interest to have an Amnio. I hope this helps.
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| Posted 7/18/08 11:21 AM |
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asecretposter
LIF Adolescent
Member since 4/08 574 total posts
Name:
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Re: Anyone know anything about Fragile X?
Very helpful thank you. She immediately talked about counseling before recommending DH go for bloods. That is what confused me. She did mention that it is very remote that it is even an issue as I technically did not test positive, but I am in a "grey area." DH would have to be truly positive for it to even be a concern it sounded like, but then to immediately recommend counseling... I don't know. Unfortunately I am at work & they do not know yet so I could not ask too many questions. I will; call them back at lunch.
Thanks everyone!
Message edited 7/18/2008 11:27:26 AM.
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| Posted 7/18/08 11:25 AM |
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LuckySV
LIF Adult
Member since 10/05 4675 total posts
Name:
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Re: Anyone know anything about Fragile X?
Posted by snowflake08
Posted by npbride
Well, my dr recommended we go for genetic counseling b/c I tested positive as a carrier for 2 genetic disorders (CF and SMA). We chose not to go to counseling yet until we get the results of DH's bloodwork. Anyway, your doctor should give you the stats on how many people end up being carriers. FOr CF, my doctor said it's a 1 in 10,000 chance that anyone is a carrier for CF. That made me feel pretty good that DH was not a carrier (he's not). Also, even if DH is a carrier that's not a guarantee that the baby will be inflicted with the disorder. I would contact your Dr and try to get some more info.
can i ask? when you say you tested positive, what test was it?
It's just a blood test and they send the blood out to a genetics lab. It usually takes about 7-10 days to get the results.
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| Posted 7/18/08 11:26 AM |
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mikeswife06
Drama Momma
Member since 9/06 9947 total posts
Name:
Anne
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Re: Anyone know anything about Fragile X?
They thought my SIL had it. She had a blood test and it came back in a week.
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| Posted 7/18/08 11:31 AM |
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jprimrose
I love my little munchkins!
Member since 10/05 3939 total posts
Name:
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Re: Anyone know anything about Fragile X?
Posted by asecretposter
Very helpful thank you. She immediately talked about counseling before recommending DH go for bloods. That is what confused me. She did mention that it is very remote that it is even an issue as I technically did not test positive, but I am in a "grey area." DH would have to be truly positive for it to even be a concern it sounded like, but then to immediately recommend counseling... I don't know. Unfortunately I am at work & they do not know yet so I could not ask too many questions. I will; call them back at lunch.
Thanks everyone!
Ask your doctor but maybe if you have the results of your DH's blood work when you go for genetic counseling it might give the genetic counselor a better picture. Do you know what I mean? Also you can go for genetic counseling now and then when you DH's blood work comes back if you think it is necessary you can go again. Do what ever will ease you mind. I went for genetic counseling twice with my last pregnancy. 
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| Posted 7/18/08 11:32 AM |
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asecretposter
LIF Adolescent
Member since 4/08 574 total posts
Name:
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Re: Anyone know anything about Fragile X?
My real problem is I don't trust the lab that I have to use (DHs insurance only covers one lab.) They missed the CF one last time and lost a whole bunch of my results and I had to get more bloods. I think also b/c I am now that magic age she is feeling like I should have all the tests done (CVS and all those) whereas last PG I did not even have an ultrascreen. It was just something I did not expect today.
Thanks again, your experience makes me feel a lot better.
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| Posted 7/18/08 11:36 AM |
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Re: Anyone know anything about Fragile X?
I just wanted to wish you luck...
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| Posted 7/18/08 11:38 AM |
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asecretposter
LIF Adolescent
Member since 4/08 574 total posts
Name:
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Re: Anyone know anything about Fragile X?
Posted by Summersalwaysinseason
I just wanted to wish you luck...
Thank you so very much.
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| Posted 7/18/08 11:39 AM |
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jprimrose
I love my little munchkins!
Member since 10/05 3939 total posts
Name:
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Re: Anyone know anything about Fragile X?
Posted by asecretposter
My real problem is I don't trust the lab that I have to use (DHs insurance only covers one lab.) They missed the CF one last time and lost a whole bunch of my results and I had to get more bloods. I think also b/c I am now that magic age she is feeling like I should have all the tests done (CVS and all those) whereas last PG I did not even have an ultrascreen. It was just something I did not expect today.
Thanks again, your experience makes me feel a lot better.
I hope everything works out.
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| Posted 7/18/08 11:45 AM |
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