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AFP results -- not very reassuring *update on bottom*

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pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

AFP results -- not very reassuring *update on bottom*

I got my AFP test done a month ago, and the results came back good. They said my risk of having a baby with Down's was less than 1 in 5,000. This really put my mind at ease. I was a bit worried, because I am 36, so based on my age, my risk of having a baby with Down's is about 1 in 200. Based on this result, I had ruled out having an amnio. Last night, I went to my doctor, and he said that the AFP test only picks up chromosomal abnormalites 70% of the time! So that means that 30% of the time, you can have something wrong and it won't even be detected!!!!! I am so upset and disheartened now and don't know if I should go for the amnio. My level II is tomorrow, and he said that even that is only 80% sensitive for picking up problems!! Apparently the risk of miscarriage from amnio is 1 in 200-400. I've been so upset since last night, and I really don't know what to do now.

Message edited 12/9/2005 3:08:28 AM.

Posted 12/7/05 9:36 AM
 
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Shelly
She's 7!!!

Member since 8/05

14624 total posts

Name:

Re: AFP results -- not very reassuring

I have no advice but lots of Chat Icon Chat Icon Chat Icon Chat Icon and Chat Icon Chat Icon Chat Icon Chat Icon . There is no easy way to figure this out. You have to trust whatever you think is best.

Posted 12/7/05 9:41 AM
 

MrsJ
I love my Katie Bug

Member since 5/05

11357 total posts

Name:
Kathy

Re: AFP results -- not very reassuring

I'm in the same situation as you are.
I've been trying to decide if I should have the amnio for months now.

The AFP is not 100%, neither is the LevelII and neither is the Ultrascreen (which you would normally have around 12 weeks if you opted for it). (Even the amnio is NOT 100%, but it is close and 99% accurate.)

They are all diagnostic tools which help you to determine if they might be a problem which requires further testing.

Your reults for the AFP are really great!!! Did yuo have the Ultrascreen done too? Those results, coupled with the results of your Level II sono should give you a good idea of where you stand. If you results from the LEvel II are great too, you might want to consider not having the amnio.

The amnio carries a 1/200 chance of miscarriage...in my mind, that's too high. So we've decided that since my ultrascreen was great and so was the AFP....as long as my Level II comes back good, we will not have the amnio.

It's such a personal decision and its so hard to make. Talk with DH and your doctor about it and maybe it will help you make a decision.

Good luck with everything Chat Icon

Message edited 12/7/2005 9:42:35 AM.

Posted 12/7/05 9:41 AM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: AFP results -- not very reassuring

Posted by MrsJ

I'm in the same situation as you are.
I've been trying to decide if I should have the amnio for months now.

The AFP is not 100%, neither is the LevelII and neither is the Ultrascreen (which you would normally have around 12 weeks if you opted for it). (Even the amnio is NOT 100%, but it is close and 99% accurate.)

They are all diagnostic tools which help you to determine if they might be a problem which requires further testing.

Your reults for the AFP are really great!!! Did yuo have the Ultrascreen done too? Those results, coupled with the results of your Level II sono should give you a good idea of where you stand. If you results from the LEvel II are great too, you might want to consider not having the amnio.

My doctor didn't offer the ultrascreen, which I've very angry about. And, he doesn't give me answers about the amnio other than the statistics and to say that I have alot to think about. Why can't they understand that we need a little advice and reassurance???

The amnio carries a 1/200 chance of miscarriage...in my mind, that's too high. So we've decided that since my ultrascreen was great and so was the AFP....as long as my Level II comes back good, we will not have the amnio.

It's such a personal decision and its so hard to make. Talk with DH and your doctor about it and maybe it will help you make a decision.

Good luck with everything Chat Icon

Posted 12/7/05 9:48 AM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: AFP results -- not very reassuring

Posted by MrsJ

I'm in the same situation as you are.
I've been trying to decide if I should have the amnio for months now.

The AFP is not 100%, neither is the LevelII and neither is the Ultrascreen (which you would normally have around 12 weeks if you opted for it). (Even the amnio is NOT 100%, but it is close and 99% accurate.)

They are all diagnostic tools which help you to determine if they might be a problem which requires further testing.

Your reults for the AFP are really great!!! Did yuo have the Ultrascreen done too? Those results, coupled with the results of your Level II sono should give you a good idea of where you stand. If you results from the LEvel II are great too, you might want to consider not having the amnio.

The amnio carries a 1/200 chance of miscarriage...in my mind, that's too high. So we've decided that since my ultrascreen was great and so was the AFP....as long as my Level II comes back good, we will not have the amnio.

It's such a personal decision and its so hard to make. Talk with DH and your doctor about it and maybe it will help you make a decision.

Good luck with everything Chat Icon



My doctor did not offer the ultrascreen, which I'm very angry about. And all he does is tell us the statistics and tell me that I have alot to think about. Why can't he understand that we need a little advice and reassurance???

Posted 12/7/05 9:50 AM
 

anon
where's winter?

Member since 11/05

2209 total posts

Name:

Re: AFP results -- not very reassuring

i will have the same approach as MrsJ - i had the ultrascreen and am scheduled to the AFP in a few weeks. if both are okay, i will elect not to have an amnio. i am 32. once i hit 35+ i think i will have an amnio, but i will have a better idea when i get to that point...

btw - does anyone know what is the latest one is to get an amnio should the results be negative where one would consider termination?

Posted 12/7/05 9:58 AM
 

MrsJ
I love my Katie Bug

Member since 5/05

11357 total posts

Name:
Kathy

Re: AFP results -- not very reassuring

Posted by anon

i will have the same approach as MrsJ - i had the ultrascreen and am scheduled to the AFP in a few weeks. if both are okay, i will elect not to have an amnio. i am 32. once i hit 35+ i think i will have an amnio, but i will have a better idea when i get to that point...

btw - does anyone know what is the latest one is to get an amnio should the results be negative where one would consider termination?




I *think* but I'm not 100% sure that 26 weeks is the latest they will go as far as termination. But, it also varies from state to state.

Posted 12/7/05 10:04 AM
 

MrsJ
I love my Katie Bug

Member since 5/05

11357 total posts

Name:
Kathy

Re: AFP results -- not very reassuring

Posted by pharmcat2000
My doctor did not offer the ultrascreen, which I'm very angry about. And all he does is tell us the statistics and tell me that I have alot to think about. Why can't he understand that we need a little advice and reassurance???



Who is doing your level II? Is it a doctor? Someone you can talk to? The doctor that did my Ultrascreen was very helpful. She is the one who suggested that we we get the results from the other tests and then decide to have the amnio, or not.

My friend just had the amnio, she is 37, and everything was fine. No complications at all. It is a slim chance that something could go wrong, but many women have these tests done every day without problems.

Is there another doctor that you can talk with in your group? Do you have any family history of Downs or other chromosonal problems? That is something to consider too.

Posted 12/7/05 10:08 AM
 

LIMOMx2
...

Member since 5/05

24989 total posts

Name:

Re: AFP results -- not very reassuring

I had the ultrascreen done and the genetic counselor told me that the test is very very accurate when combined with the blood test.

I am 27 but I had a brother that had downs and my SIL lost 2 babies from Trisomy 13 so depending on the results of the ultrascreen, I will get the amnio.

The study of 1 in 200 having a MC is from a study done over 15 years ago when they equipment and technique was not as good as today. I asked a zillion questions when we went to see the genetic counselor which was so helpful.

Posted 12/7/05 11:53 AM
 

nrthshgrl
It goes fast. Pay attention.

Member since 7/05

57538 total posts

Name:

Re: AFP results -- not very reassuring

Message edited 3/20/2006 1:25:22 PM.

Posted 12/7/05 12:55 PM
 

Samlove

Member since 5/05

4729 total posts

Name:
Shari

Re: AFP results -- not very reassuring

I am also 36. I had the 12 week sono where the measure the folds in the baby's neck - that was normal. I questioned this because I did not have the blood test that goes along with it. Anyway, I also had the 20 week sono is that the level ll? They said all looked good.

At 16 week I had the AFP. MY doc claims that if AFP, 12 sono and 20 week sono are good then I am going to be fine. I hope thats true because now you got me thinking.

I hope all is ok - good luck with everything

Posted 12/7/05 1:01 PM
 

MrsJ
I love my Katie Bug

Member since 5/05

11357 total posts

Name:
Kathy

Re: AFP results -- not very reassuring

Posted by Samlove

I am also 36. I had the 12 week sono where the measure the folds in the baby's neck - that was normal. I questioned this because I did not have the blood test that goes along with it. Anyway, I also had the 20 week sono is that the level ll? They said all looked good.

At 16 week I had the AFP. MY doc claims that if AFP, 12 sono and 20 week sono are good then I am going to be fine. I hope thats true because now you got me thinking.

I hope all is ok - good luck with everything




That's what our plan is too - what you're doing. If all tests come back normal, we're going to take that as a sign and not do the amnio.

Posted 12/7/05 1:04 PM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: AFP results -- not very reassuring

Posted by MrsJ

Posted by Samlove

I am also 36. I had the 12 week sono where the measure the folds in the baby's neck - that was normal. I questioned this because I did not have the blood test that goes along with it. Anyway, I also had the 20 week sono is that the level ll? They said all looked good.

At 16 week I had the AFP. MY doc claims that if AFP, 12 sono and 20 week sono are good then I am going to be fine. I hope thats true because now you got me thinking.

I hope all is ok - good luck with everything




That's what our plan is too - what you're doing. If all tests come back normal, we're going to take that as a sign and not do the amnio.



This would all be great for me, if my doctor had bothered to do the ultrascreen at 12 weeks. Honestly, I feel he was really negligent, especially since I told them from the time I was 5 weeks along that I was worried, and was considering amnio. I feel he really rushed through everything up to this point.

Posted 12/7/05 2:31 PM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: AFP results -- not very reassuring *update on bottom*

Well, I had the level II today and both the technician and the doctor said that everything looks good. I asked the doctor specifically to look for things indicating spina bifida or down's. He said he looked at specific "down's markers" and didn't see any (white spot in the heart, short femur, certain facial features). My doctor says that the level II is about 80% effective at picking up these things. So now DH and I are trying to decide if the good results on the AFP (70% sensitivity) and these results are enough peace of mind for us to pass on the amnio. Anybody else in my position (over 35) with any opinions?

Posted 12/9/05 3:07 AM
 

pharmcat2000
Mom of 2 + 1

Member since 10/05

7395 total posts

Name:
Catherine

Re: AFP results -- not very reassuring *update on bottom*

Anybody?

Posted 12/9/05 5:54 PM
 

anon
where's winter?

Member since 11/05

2209 total posts

Name:

Re: AFP results -- not very reassuring *update on bottom*

Posted by pharmcat2000

Well, I had the level II today and both the technician and the doctor said that everything looks good. I asked the doctor specifically to look for things indicating spina bifida or down's. He said he looked at specific "down's markers" and didn't see any (white spot in the heart, short femur, certain facial features). My doctor says that the level II is about 80% effective at picking up these things. So now DH and I are trying to decide if the good results on the AFP (70% sensitivity) and these results are enough peace of mind for us to pass on the amnio. Anybody else in my position (over 35) with any opinions?


what does your doctor suggest?

would you terminate if the amnio came back questionable? if the answer to this is no, then IMO there is no reason to get one.

it's such a personal decision, and i honestly can't say what i would do just yet even though i think i would elect to have an amnio over 35. however, since all other tests look good, i really don't know if i would go ahead with it. it's a tough call...

Posted 12/9/05 6:32 PM
 

NovemberSue
LIF Adolescent

Member since 11/05

671 total posts

Name:
Susan

Re: AFP results -- not very reassuring *update on bottom*

From what I read, the amnio only picks up 10% of problems that could be wrong. It is a very personal decision.
I feel that drs always push for the amnio. I don't know if its some sort of money thing or what but so many people I know were told that something could be wrong with their baby and they had the amnio done because they were so worried.
Personally I didn't go for the amnio because me and DH feel that we will love the baby no matter what. There is a slight risk of something happening from the amnio and to me it wasn't worth taking the chance no matter how minor it is.
Again, I don't want anyone to take offense because it is a very personal decision and some people feel more comfortable getting the amnio. But for us, we choose NOT to.
If your AFP came back ok and your 20 wk sono came back ok, then perhaps that is all the piece of mind you need.
If you and your DH feel better getting the amnio, there is nothing wrong with that. Its a decision that ONLY YOU can make.
(BTW, I am 37.)

Posted 12/9/05 7:17 PM
 

nrthshgrl
It goes fast. Pay attention.

Member since 7/05

57538 total posts

Name:

Re: AFP results -- not very reassuring *update on bottom*

I'm 37 & opted out of an amnio for both my kids when I had them at 33 & 35. My feeling was if the markers came back ok, then I was just going to skip it. I don't believe eggs expire at the age of 35.

I have to agree with Sue that it's too personal of a decision for anyone but you & DH.

I had read about how much safer it is these days, blah blah blah - and hten read a devasting LIW story about one that went bad. Given the facts I know now, I'm not sure if I would do it.

Either way - whatever you do -I wish you the best of luck.Chat Icon

Posted 12/9/05 10:30 PM
 
 

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