&$%#@ blasted AFP test - Sybermoms Parenting Forum
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post #1 of 13 (permalink) Old 01-15-2005, 01:46 PM Thread Starter
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&$%#@ blasted AFP test

Dh and I weren't even going to do the Alfa Feto-Protein test (sp?) but after talking to some friends who are nurses, we decided to go ahead.

I wish we hadn't. The good news is the actual test came back negative. No Downs, no Spina Bifida, etc....
There was a hormone level (uncongegated estriol) that came back pretty low. The test results came with a little notation that said that this may indicate a possible x-link disorder known as ichthyosis (I know I murdered the spelling). Basically, it's a skin disorder that causes extreme dry and fish-scaly skin.

Now they want us to travel to an entirely different state (we live in BFE) to get a high-grade ultrasound and genetic counseling.

Is it just me, or does this damn AFP test cause more stress than it is worth?

Does anyone else have a similar experience?

Aaaaargh.
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post #2 of 13 (permalink) Old 01-15-2005, 02:01 PM
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I didn't have it done for these very reasons. The high level u/s might not be so bad. It might turn out to be nothing and it'll be another chance to see your baby. Click here to enlarge I hope everything works out for you. Click here to enlarge
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post #3 of 13 (permalink) Old 01-15-2005, 02:42 PM
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I really really hate the AFP Click here to enlarge

It's important to remember that the AFP cannot diagnose a disease. It can tell you (with varying, but generally very low accuracy) that your child may be at an increased risk for a disease.

We had an AFP come back with a high risk of DS with M. We did have a level II us, but that was it. He is totally healthy, and I wish we hadn't been talked into the test because it caused a lot of undue stress. Needless to say, we didnt' have the test done this time around.

Try not to stress about it too much. If you do decide to do the high level us, it may relieve a little of your stress- but if they can't get a definitive answer, they may try to talk you into more invasive tests (amnio, etc) that are more risky.

I'm sure everything will work out fine Click here to enlarge
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post #4 of 13 (permalink) Old 01-16-2005, 10:37 AM Thread Starter
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I don't think they will be able to talk me into an amnio or CVS. I'm not ready to put my baby at risk for a possible skin disease. After all, what could they do now anyway?

If we have a 3rd child, absolutely no AFP test. Period.
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post #5 of 13 (permalink) Old 01-16-2005, 03:05 PM
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I had the AFP test and wish I hadn't. I know am stressed about Downs. I did 2 level II ultrasounds, which fortunately didn't show anything. I agonized over whether or not to have the amnio done. In the end, I chose not to do it.
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post #6 of 13 (permalink) Old 01-17-2005, 10:31 AM
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I have a love/hate relationship with the AFP. With DS, mine came back triple negative and I breathed a huge sign of relief. I'm currently waiting for the results of my AFP with this baby - I will hopefully get them tomorrow - and I'm very very stressed out about it.

If I got your results, I would go for the level 2 u/s.
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post #7 of 13 (permalink) Old 01-17-2005, 10:49 AM
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I opted out of the AFP with my second daughter and with this baby because of the false negative I got with my first daughter. It just wasn't worth the nervousness and fear. Click here to enlarge

I have mixed feelings, though. I can understand why some would want it, to be prepared, but it wouldn't change anything for me.
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post #8 of 13 (permalink) Old 01-17-2005, 10:56 AM
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Sorry you have to go through that Click here to enlarge I had my AFP test a few weeks ago, and like last time, I figure they will call me if there is anything remarkable about it. Click here to enlarge Good luck!
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post #9 of 13 (permalink) Old 01-18-2005, 06:29 AM
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How far along do they usually do these tests?
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post #10 of 13 (permalink) Old 01-18-2005, 06:55 AM
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I think the blood test for the afp is done between 15-17 weeks (I don't quite remember).
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post #11 of 13 (permalink) Old 01-18-2005, 07:10 AM
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I had mine done at my 16 week appoint. It came back normal.

We didn't do it with the girls because its basically useless with multiples because it will come back high because there are 2 babies in there. Sometimes, though, people find out they are having twins because they get a high afp result and get sent to u/s to see why.
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post #12 of 13 (permalink) Old 01-18-2005, 02:33 PM
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I had the exact same thing with my afp. Low estriol levels, but I also ended up with a positive DS screen because of this (1:129) I was also pushing 34 years when I had the test run, so that may have bumped me up as well. Anyway, you actually did a good job on the spelling Click here to enlarge. Ichthyosis can't be diagnosed by u/s anyway, so do you really want to mess with traveling out of state for testing? I did go and have level II u/s and genetic counseling, and from what I understood, there was only a slight correspondance in male babies that had a link with low estriol levels and ichthyosis. So not really a huge risk. Anyway, I hope you are doing ok! By the way, my kiddo was fine!
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post #13 of 13 (permalink) Old 01-21-2005, 12:45 PM Thread Starter
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Thanks, Toe....

As for traveling out of state for the test... We're going to make a family visit out of it. We were unable to visit during the holdiays because of other issues with this pregnancy, so I'm actually looking forward to it.

It's nice to know that others have been through similar trials.

Thanks, everyone.
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