Cystic Fibrosis-am I not being cautious enough?

A little backround, yesterday I received a phone call from the pediatrician. He said that the newborn testing came back that B possibly had cystic fibrosis or was a carrier, and they want me to bring him to a Pediatric Pulminary Specialist.

I told the doctor that I believed that I was tested for this during the pregnancy and was negative, but the doctor said that it is not a standard test, so he doesn't believe that I would have been. So of course I try to rack my brain trying to remember if I was or not.

I immediately got on the phone with the OBGYN and had a nurse call me back to tell me whether I was ever tested to find out if I was a cystic fibrosis carrier. She called me back, and told me that I was tested, and it is mandatory testing by the state now, and I was in fact negative. So there is no way B could have cystic fibrosis because both DH and I would have to be carriers.

Of course after telling DH all of this, he is nervous because of the 1st baby, then the Trisomy 18 scare we had with B.

Now, I really want to call the pediatrician back and tell him this information, and let him know not to scare new mothers like this.

Am I not being cautious enough by deciding not to bring B for a sweat test and going to the doctor for something I don't believe he has?

What would you do?

Message edited 12/10/2012 2:16:31 PM.

Re: Cystic Fibrosis-am I not being cautious enough?

I would have OB/gyn fax your bloodwork to your peds. this way they can see you were tested and it was negative. Maybe they mixed your sons up with someone elses baby.

Re: Cystic Fibrosis-am I not being cautious enough?

Re: Cystic Fibrosis-am I not being cautious enough?

I would show the ped the tests from your obgyn, but if he still wants Braydon to have the test, I would take him anyway, just to be doubley cautious.

Re: Cystic Fibrosis-am I not being cautious enough?

Posted by neener1211

A little backround, yesterday I received a phone call from the pediatrician. He said that the newborn testing came back that Braydon possibly had cystic fibrosis or was a carrier, and they want me to bring him to a Pediatric Pulminary Specialist.

I told the doctor that I believed that I was tested for this during the pregnancy and was negative, but the doctor said that it is not a standard test, so he doesn't believe that I would have been. So of course I try to rack my brain trying to remember if I was or not.

I immediately got on the phone with the OBGYN and had a nurse call me back to tell me whether I was ever tested to find out if I was a cystic fibrosis carrier. She called me back, and told me that I was tested, and it is mandatory testing by the state now, and I was in fact negative. So there is no way Braydon could have cystic fibrosis because both DH and I would have to be carriers.

Of course after telling DH all of this, he is nervous because of the 1st baby, then the Trisomy 18 scare we had with Braydon.

Now, I really want to call the pediatrician back and tell him this information, and let him know not to scare new mothers like this.

Am I not being cautious enough by deciding not to bring Braydon for a sweat test and going to the doctor for something I don't believe he has?

What would you do?

Re: Cystic Fibrosis-am I not being cautious enough?

Re: Cystic Fibrosis-am I not being cautious enough?

This happened to my DS as well. I had done the screening beforehand because I do have cystic fibrosis in my family., but was negative myself. DS screening came back with it, and i went ahead with the sweat test anyway, to see if he could be a carrier from DH somehow Anyway it was negative and all worked out. My DS also had several blood transfusions when he was born, so a lot of his newborn screenings were off..but we followed through with recommened testing anyway. You have to do what ir right for you. Discuss all of this with your Ped. and go from there.

Re: Cystic Fibrosis-am I not being cautious enough?

B has no symptoms of cystic fibrosis in a newborn. The doctor even asked me about his stool at birth, which B had no problem with. The ped said, hmmmm.

He said it was just a possibility he was a carrier, but I would hate to have to hold his arm out for any length of time while he screams. Not fun

Message edited 12/10/2012 2:30:25 PM.

Re: Cystic Fibrosis-am I not being cautious enough?

Re: Cystic Fibrosis-am I not being cautious enough?

Posted by XcalystaX

Posted by neener1211

A little backround, yesterday I received a phone call from the pediatrician. He said that the newborn testing came back that Braydon possibly had cystic fibrosis or was a carrier, and they want me to bring him to a Pediatric Pulminary Specialist.

I told the doctor that I believed that I was tested for this during the pregnancy and was negative, but the doctor said that it is not a standard test, so he doesn't believe that I would have been. So of course I try to rack my brain trying to remember if I was or not.

I immediately got on the phone with the OBGYN and had a nurse call me back to tell me whether I was ever tested to find out if I was a cystic fibrosis carrier. She called me back, and told me that I was tested, and it is mandatory testing by the state now, and I was in fact negative. So there is no way Braydon could have cystic fibrosis because both DH and I would have to be carriers.

Of course after telling DH all of this, he is nervous because of the 1st baby, then the Trisomy 18 scare we had with Braydon.

Now, I really want to call the pediatrician back and tell him this information, and let him know not to scare new mothers like this.

Am I not being cautious enough by deciding not to bring Braydon for a sweat test and going to the doctor for something I don't believe he has?

What would you do?

First of all , because it sucks to get a call like this. If I were you I would ask to speak to the ped again and let him know you were tested and were negative. See what he has to say. If he insists on testing then I would consider doing it, if anything for peace of mind. Because one of the tests has to be off (either yours or Braydon's right?) or could Braydon be a carrier if you hubby (since he didn't get tested) is a carrier?

Re: Cystic Fibrosis-am I not being cautious enough?

Message edited 12/10/2012 2:30:49 PM.

Re: Cystic Fibrosis-am I not being cautious enough?

Posted by 1stimemom

I would show the ped the tests from your obgyn, but if he still wants Braydon to have the test, I would take him anyway, just to be doubley cautious.

Re: Cystic Fibrosis-am I not being cautious enough?

This happened to DS when he was born, we went ahead with the sweat test and then had to follow up with a full genetic blood work up b/c the sweat test was inconclusive. We did the testing b/c even though I was tested while pg and negative they only test for the most common mutations for this part of the country, there is a small chance that I could've carried a different mutation that is not common here or rarely there can be a spontaneous mutation in the baby and then if that is mixed with a mutation from DH then there could've been a possibility he had CF. DS had no symptoms of a CF newborn but the testing put our fears to rest and he is just a carrier. I hope this is all making sense, anyway, I say do what you think is right in your heart, I just wanted to share our story with you b/c I know it's not a nice thing to have to deal with.

Re: Cystic Fibrosis-am I not being cautious enough?

We had the same experience. I tested positive as a carrier during pregnancy dh tested negative. DD tested positive as a carrier. Our Dr said that the sweat test is pushed by the state in this case bc the state feels like if they screen everyone even if a handful can be helped its worth it. I agree that it seems totally ridiculous and unnecessary. We will probably do it our Dr made it seem like we don't have a choice

Re: Cystic Fibrosis-am I not being cautious enough?

I would get the testing done. We went through it too.

Re: Cystic Fibrosis-am I not being cautious enough?

Posted by KateDevine

Posted by 1stimemom

I would show the ped the tests from your obgyn, but if he still wants Braydon to have the test, I would take him anyway, just to be doubley cautious.

ITA with this!

But I'm sorry you are going through this

Re: Cystic Fibrosis-am I not being cautious enough?

Im sure everything is going to be fine.

The prenatal testing that you had only tests for the most common forms of CF. There are other less common forms of CF that isnt part of the screening....

A lot of mommies on here have been through it. Just listen to them...move forward with what the doctor recommends...if for nothing else peace of mind....

That darling baby boy is going to be just fine...

Re: Cystic Fibrosis-am I not being cautious enough?

I agree, I would have the testing done for peace of mind. I am sure everything will be okay!

Re: Cystic Fibrosis-am I not being cautious enough?

In order, this is what I would do, and I did get tested well before I was pg because DH may be a carrier and was too chicken to get tested.

Call the ped
Fax the OBGYN bloodowrk to him
Get Braydon tested anyway, no harm in finding out if he's a carrier.....he eventually will have to know, even if it's many years down the line. Knowledge is key in any event.

I know your pain, we had to go through many tests when Gavin was 5 days old (catheter, IV, CAT scan, brain scan, and almost a spinal), just to confirm that he was perfect. But peace of mind is a wonderful thing.

Good luck!

Re: Cystic Fibrosis-am I not being cautious enough?

Message edited 12/8/2008 10:39:18 AM.

Re: Cystic Fibrosis-am I not being cautious enough?

Re: Cystic Fibrosis-am I not being cautious enough?

We also did the sweat test for my second daughter, who is a carrier like me. As others have mentioned, important for her to know when she is ready to have kids. The test was not as bad as it sounds.

Re: Cystic Fibrosis-am I not being cautious enough?

Sorry you're going through this

I agree with sending the test results over to the pediatrition and take it from there. Good luck.

Re: Cystic Fibrosis-am I not being cautious enough?

Honestly Janine.. I wouldn't be freaking out too badly.

Kristina is going to be a carrier - I'm sure of it. I am b/c of my Greek heritage.

Being that you and your DH both tested negative, I would just forward those results over to your ped, and then see what he wants to do based on the neg results.

Try not to freak too badly momma!

Re: Cystic Fibrosis-am I not being cautious enough?