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Positive AFP screening, anyone know anything?


Forum: High Risk Pregnancy

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  #1  
June 22nd, 2007, 01:53 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
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Hi everyone I am usually just a lurker around here. I am having a little boy, due Nov. 27.
At 16.5 weeks I had a blood test for AFP which screens for both neural tube defects and downs syndrome.

My test came back positive for possible downs syndrome.

Can anyone point me to any information, resources, or even better, personal experience?

I have an appointment with a specialist to do genetic counseling and a detailed ultrasound on July 5th, I don't know what I am going to do until then. I guess based on those results I may have to have an amnio done as well.

I am scared out of my mind, I just want a healthy baby! Any experience is greatly appreciated.

-Sara
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  #2  
June 22nd, 2007, 08:04 PM
klfc28
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My SIL got a positive result for possible downs as well before her 18th week. Her results came back 1:109, which is really high risk (that of a 40yr old woman) she is only 27. The older you are the more at risk you are for a downs baby.

How old are you? What was your risk rate?

Please keep in mind that those tests have an extreme high FALSE positive. She had the ultrasound and amnio test, which all came back normal and she is having a healthy baby girl in September.

So, you could very well have a false positive test. I refused the test just because of the high rate of false positives and knowing I would not do an amnio (I had major surgery at 17 weeks and I didn't want to put my baby at further risk). I am also only 28, so I have a very low risk in general for a downs baby. If you are over 35, there is a higher concern and less likely of it being a false positive.

Not sure where you can look online, just google AFP or downs. Good luck!
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  #3  
June 22nd, 2007, 09:09 PM
Mega Super Mommy
Join Date: Apr 2007
Location: New Jersey
Posts: 1,449
I know you are scared, hon. I know a lot of people who have taken the test and have gotten a flase positive. In fact, I don't think i've been anyone who didn't get a false positive! thats why a lot of people refuse the test.


Until you get the next test, you're gonna have to wait. It sucks sucks sucks!!! I can't think of anything to say about it cause I know the waiting is sucky. Just lean on your friends and family and try to worry too much because like I said before, the margin of error on these tests are H-U-G-E!!!! keep us posted
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  #4  
June 23rd, 2007, 04:35 AM
Mega Super Mommy
Join Date: Jul 2005
Location: PA
Posts: 2,512
Like the other girls said, try not to worry to much yet because there are alot of people who get false positives...

Here is an article I found that tells you about the tests:
http://www.babycenter.com/refcap/1487.html

I do know some people refuse this test because it is common for false positives. So go and talk to the genetic consouler and see what they say.
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  #5  
June 23rd, 2007, 07:27 AM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Quote:
My SIL got a positive result for possible downs as well before her 18th week. Her results came back 1:109, which is really high risk (that of a 40yr old woman) she is only 27. The older you are the more at risk you are for a downs baby.

How old are you? What was your risk rate?

Please keep in mind that those tests have an extreme high FALSE positive. She had the ultrasound and amnio test, which all came back normal and she is having a healthy baby girl in September.

So, you could very well have a false positive test. I refused the test just because of the high rate of false positives and knowing I would not do an amnio (I had major surgery at 17 weeks and I didn't want to put my baby at further risk). I am also only 28, so I have a very low risk in general for a downs baby. If you are over 35, there is a higher concern and less likely of it being a false positive.

Not sure where you can look online, just google AFP or downs. Good luck![/b]

Thank you for all the replies, I am a preggo newbie really, so I didn't know about refusing the screenings. All my friends either had kids awhile ago, or don't have kids, so I am not really around pregnnt ladies to talk to about this stuff, I guess I should hang out here more!
I am 29 years old, first baby!
I have read a lot about the false positives, but I also know that even if it is positive it does not mean I will have a downs syndrome baby, it just means there is a higher risk factor.

While I know the amnio does carry a risk I feel like I would want to know so that we could either be relieved or prepare for the care that would be needed. The amnio carries a less than 1% risk, and what I have heard they monitor the baby and placenta very carefully. Of course I am not looking forward to that big needle, but also we will just have to see how high our risk is.

I don't know our risk rate until we meet with the genetic counselor. Neither hubby or I have any risk factors or family history, so I am hoping it is just one of those things. I guess I couldn't get off with an easy pregnancy!

Thanks again, it really is nice to have someone to talk to. Especially while I wait until July 5 for my specialist appointment.
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  #6  
June 23rd, 2007, 08:24 AM
Cindermella's Avatar Freakin Know it all
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Location: Canada
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Will you be having an amnio?
Hope things go alright. I am leery of this test (and this test alone) because of the high risk of false positive.
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  #8  
June 25th, 2007, 12:13 PM
~~~Sara~~~'s Avatar Platinum Supermommy
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I am not 100% sure if we are going to have the amnio. Basically we have the genertic counseling first, then an ultrasound. Based on the results of those two items, we will decide if we want the amnio.

I know to some people they would say why take ANY risk, but the risk of harm to the baby is .06% or less, so it may be something we opt to do, so that we can be prepared for what lies ahead. The only catch is we will likely have the amnio done the same day as all the other stuff so hubby and I will have prepared basically what we want to do and then see if it feels right that day. Also the Dr. performing the amnio is one of the best in the state where we live and he does a lot of them so I will also ask him what his incidence of complications that he has seen. It's my understanding the higher skilled person you have doing the amnio, the less incidence of complications.

I love this little boy already with all my heart and I have to beleive that this positive test was a fluke thing, we don't have a single risk factor or family history. But I also know we have to go though a few more tests to hopefully prove me right.

Thanks everyone!
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  #9  
June 25th, 2007, 12:39 PM
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Hi there,
I had an amino done so I thought that I would give you my experience. If you feel as though you want to know for sure you should get it done. It takes about 1-2 minutes. It hurts a little. Kind of feels like mild period cramps. Once the needle is out of your belly , the pain went away. I had no complications. Just take it easy for a couple of days if you get it done. I had a baby with Triploid syndrom so I did have a + maternal serum test. But during the waiting period, i was on all kinds of message boards andthere are sooooo many false positives with those tests, try to remember that the odds are in your favor right now. One step at a time. if you have an questions, feel free to PM me anytime. I promised myself that when I went through this horrific experience I would do what ever it took to help other women or at least answer questions.
I am praying for you and your son. I am sure hes just fine
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  #10  
June 25th, 2007, 02:39 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Quote:
Hi there,
I had an amino done so I thought that I would give you my experience. If you feel as though you want to know for sure you should get it done. It takes about 1-2 minutes. It hurts a little. Kind of feels like mild period cramps. Once the needle is out of your belly , the pain went away. I had no complications. Just take it easy for a couple of days if you get it done. I had a baby with Triploid syndrom so I did have a + maternal serum test. But during the waiting period, i was on all kinds of message boards andthere are sooooo many false positives with those tests, try to remember that the odds are in your favor right now. One step at a time. if you have an questions, feel free to PM me anytime. I promised myself that when I went through this horrific experience I would do what ever it took to help other women or at least answer questions.
I am praying for you and your son. I am sure hes just fine[/b]
THANK YOU! Your post made me teary!

I also have other good news! I got my appointment moved up to THIS friday instead of July 5.
They said bed rest the day of and light activity for 2 days, that will be easy enough since it's the weekend!
I am so glad you didn't have any complications and will hope for the same. The Dr. doing the amnio is great.
I guess we still want an amnio, but it will also depend what the genetic counselor and ultrasound say...

I actually expect the amnio procedure to hurt a LOT, but I can deal with it.
You have helped me a lot just by telling me your story, thank you. I am so sorry to hear about baby with Triploid syndrom.

- Sara
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  #11  
June 27th, 2007, 04:55 AM
Mega Super Mommy
Join Date: May 2005
Location: VA
Posts: 4,035
My AFP came back high for trisomy 18. I had the amnio done, because I just wanted to be prepared in case something was "wrong" with my baby. The needle is pretty big, and it was kind of painful. I cried, but I think that was more from worry than the actual pain. We got the results back and everything was fine. And my son is healthy and will be 2 in October.

It's hard not to worry, because I know I did. Good luck to you and your baby.
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  #12  
June 28th, 2007, 02:53 PM
~~~Sara~~~'s Avatar Platinum Supermommy
Join Date: Apr 2007
Location: So. California
Posts: 5,770
Quote:
My AFP came back high for trisomy 18. I had the amnio done, because I just wanted to be prepared in case something was "wrong" with my baby. The needle is pretty big, and it was kind of painful. I cried, but I think that was more from worry than the actual pain. We got the results back and everything was fine. And my son is healthy and will be 2 in October.

It's hard not to worry, because I know I did. Good luck to you and your baby.[/b]
Thank you for your input and vote of confidence. I can not tell you how much I appeciate it!
Our appointment is tomorrow, so I will be sure to update when I can, although it may be Saturday.

Oh and those of you that had the amnio, were you ordered bed rest that day, and did you follow it?
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  #13  
June 28th, 2007, 04:19 PM
Cindermella's Avatar Freakin Know it all
Join Date: Aug 2005
Location: Canada
Posts: 13,606
you know if you believe in your heart that your baby is alright chances are he is. I believe in mothers intuition.
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Sanity is a cozy lie.



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  #14  
June 28th, 2007, 06:05 PM
Mega Super Mommy
Join Date: May 2005
Location: VA
Posts: 4,035
I had the amnio done on a friday. They told me to take it easy until Monday. I went back to work on Tuesday, as my job entails a lot of manual labor. They did tell me bedrest after the amnio.
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  #15  
June 29th, 2007, 04:59 AM
klfc28
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Posts: n/a
Amnio's do hold a minor risk, but sometimes its a needed risk.

I had to have surgery to remove a very large ovarian cyst when I was 17 weeks pregnant. I was terrified because it had a 5% chance of pre term labor, but if I didn't have the surgery my baby had a 0% chance of survival.

Everything has a slight risk and sometimes its worth going forward.
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