ready to lose my mind! Just got a call from my OBGYN's office

it was one of the nurses, she informed me that the dr wanted her to call me and let me know that my Fragile X test came back , it's not positive , but it's not negative, it's in "gray area" ,(basically the positive means that there is a high risk of mental retardation) she said "he did some research and there are no cases recorded of babies having any kind of mental retardation when moms had gray area of Fragile X " BUT she said I shold notify my siblings and tell them to get tested too.
She went on to tell me that when I go in for the next visit they will send me and DH for genetic counseling .
Naturally I go very upset, asked her if there is any way the dr could call me .
Then I told her I have had 2 previous pregnancies and this never came up, I asked her to look through my first pregnancy records and see what that said, I also said I have records from my second pregnancy (I didn't bring them in to their office yet, so they don't have them) and I will look. She looked right away and said it says NEGATIVE, WITHING NORMAL RANGE !
Then I looked at the records from my 2nd pregnancy (before the mc) and it says NEGATIVE, WITHIN NORMAL RANGE .
After she and I read both records she said, oh wow, that is so weird, you shouldn't have this gray area , if you are negative once you are always negative, don't know what happened. I'm going to have the dr call you .
So I said yes, I would appreciate if he could call me, I would appreciate if he could see me even for 5 min when I come in to see another dr (since they couldn't give me an appt with him)
AND I would appreciate if they could repeat this test.

I am ready to pull my hair out

Message edited 2/1/2012 7:36:01 PM.

Re: ready to lose my mind! Just got a call from my OBGYN's office

I know how you feel in a way. I have no other children, this is my first. I took the Fragile X test and came back in teh gray area. She wanted me to go for genetic counseling so I would fully understand what it meant. In the end I chose not to because it was in the gray area and I heard from other moms that genetic testing freaked them out even more so!
I cried for a good long time when she told me about this but now I am better. I really think in my case it is because there is a family history of severe ADD. I asked if this was what the test was picking up and she said it could very well be this. I want you to know that I was in the SAME boat as you and understand that you are . It was just my personal choice not have genetic counesling.

Re: ready to lose my mind! Just got a call from my OBGYN's office

my dr just called me, it was 8pm. First he assured me whatever they found is "nothing to worry about at all" he said normal is 36 - 44 and mine came back 45 , so it's nothing to worry about.
then he asked me to read him records from both previous pregnancies and tell him what it says about Fragile X, so I did. I was supposed to go see another dr this week , but after reading him both reports he said to call tomorrow and tell the "girls" that I'm coming to see him, they'll have to fit me in. He said he will send the reports to the lab and ask them why the 3rd report is coming back different when past 2 pregnancies are fine. But again assured me not to worry .
So I guess we'll see.

Re: ready to lose my mind! Just got a call from my OBGYN's office

is this dr. klien's office again? seriously, they just can't get things right!!!! so sorry that you have to go through this

Re: ready to lose my mind! Just got a call from my OBGYN's office

I hope you get to talk to the Dr.
Im still waiting for them to call me back for my results...im so tired of waiting around for this office to call me.

Re: ready to lose my mind! Just got a call from my OBGYN's office

Posted by babyberry

is this dr. klien's office again? seriously, they just can't get things right!!!! so sorry that you have to go through this

Re: ready to lose my mind! Just got a call from my OBGYN's office

i am sorry you are going through this

Re: ready to lose my mind! Just got a call from my OBGYN's office

Sorry you are stressed. The doctor's office is doing the RIGHT thing by telling you that this test came back in a grey area.

If you are that unhappy, find a new practice because you will continue to get mad at other things as well.

I wish you all a healthy and happy pregnancy.

Re: ready to lose my mind! Just got a call from my OBGYN's office

Re: ready to lose my mind! Just got a call from my OBGYN's office

The dr's office had nothing to do with lab results, they told me what the lab found.
I'm not mad at the dr or his office for telling me what the results are.
I am just upset in general, just by getting the not so good news, also I am frustrated and confused since this is my 3rd pregnancy and this never was an issue before.
The only thing I was a bit annoyed when it comes to the dr's office is this:
before the nurse called me and told me the news and told me this is "serious", to tell my siblings and that my DH and I will have to go for genetic counselling ... they should have looked at the records from previous pregnancies (or at least my first pregnancy) and compared the results, this result is not something that ever changes. it stays the same.
BUT it is what it is, we -DR and me- feel that there was a mistake at the lab and the dr/lab will have to redo the test and also look at the previous records.
I will be seeing my dr. tomorrow am and we will discuss everything.

I do have to say , I am very impressed that the dr called me last night and they didn't make me wait till today. It was very nice of him . I wasn't expecting the call back last night at all , considering how difficult they have been with giving the results back and getting them to call me back. Plus he said he will come in early on Fri. so I can go and see him, instead of another dr I had an appt with in the afternoon since originally I couldn't get an appt with him.

Message edited 2/2/2012 9:40:14 AM.

Re: ready to lose my mind! Just got a call from my OBGYN's office

So sorry you are going through this - as if your journey is not tough enough. What is this test for Fragile X? I have never heard of it and this is my 4th pregnancy??

I hope they retest and find that you are back within normal range as it seems you would have to be.

I tested positive as a CF carrier when I was pregnant with my DD and I freaked out big time. We had to wait 4-5 days for DH's test results to come back and thankfully he was negative. This is a gene that no one in my family had ever been tested for and since then my sister has tested positive also so I know what its like to hear this news and genetic counselling and to be freaking out.

Re: ready to lose my mind! Just got a call from my OBGYN's office

Posted by beachgirl

So sorry you are going through this - as if your journey is not tough enough. What is this test for Fragile X? I have never heard of it and this is my 4th pregnancy??

I hope they retest and find that you are back within normal range as it seems you would have to be.

I tested positive as a CF carrier when I was pregnant with my DD and I freaked out big time. We had to wait 4-5 days for DH's test results to come back and thankfully he was negative. This is a gene that no one in my family had ever been tested for and since then my sister has tested positive also so I know what its like to hear this news and genetic counselling and to be freaking out.

Re: ready to lose my mind! Just got a call from my OBGYN's office