Question for Parents Diagnosed with CF after having a Child with CF

H

hopesiris

Guest
I asked my prenatal geneticist to do the Ambry full panel since I was pregnant at the time and was seeing him anyway. I explained that I saw information about adult onset CF and I think I have it. He was not familiar with Ambry so I explained that it's the most complete testing available. When the results came in my geneticist consulted with a CF clinic and I was referred.

You can order your own sample collection kit and forms directly from Ambry. I did that for testing my daughter Amelia's cord blood. If you call them and tell them what you want I bet they'd try to get it to you or your doctor before your visit. Doesn't hurt to ask.

There are cross infection issues to consider. That's actually a very good reason to get tested since you may culture for bugs and expose your baby. I have no experience with that but I know some people have multiple kids with CF and deal with it. The coughing since May thing could be a bug overgrowth as I'm sure by now you recognize.
 
H

hopesiris

Guest
I asked my prenatal geneticist to do the Ambry full panel since I was pregnant at the time and was seeing him anyway. I explained that I saw information about adult onset CF and I think I have it. He was not familiar with Ambry so I explained that it's the most complete testing available. When the results came in my geneticist consulted with a CF clinic and I was referred.

You can order your own sample collection kit and forms directly from Ambry. I did that for testing my daughter Amelia's cord blood. If you call them and tell them what you want I bet they'd try to get it to you or your doctor before your visit. Doesn't hurt to ask.

There are cross infection issues to consider. That's actually a very good reason to get tested since you may culture for bugs and expose your baby. I have no experience with that but I know some people have multiple kids with CF and deal with it. The coughing since May thing could be a bug overgrowth as I'm sure by now you recognize.
 
H

hopesiris

Guest
I asked my prenatal geneticist to do the Ambry full panel since I was pregnant at the time and was seeing him anyway. I explained that I saw information about adult onset CF and I think I have it. He was not familiar with Ambry so I explained that it's the most complete testing available. When the results came in my geneticist consulted with a CF clinic and I was referred.

You can order your own sample collection kit and forms directly from Ambry. I did that for testing my daughter Amelia's cord blood. If you call them and tell them what you want I bet they'd try to get it to you or your doctor before your visit. Doesn't hurt to ask.

There are cross infection issues to consider. That's actually a very good reason to get tested since you may culture for bugs and expose your baby. I have no experience with that but I know some people have multiple kids with CF and deal with it. The coughing since May thing could be a bug overgrowth as I'm sure by now you recognize.
 
H

hopesiris

Guest
I asked my prenatal geneticist to do the Ambry full panel since I was pregnant at the time and was seeing him anyway. I explained that I saw information about adult onset CF and I think I have it. He was not familiar with Ambry so I explained that it's the most complete testing available. When the results came in my geneticist consulted with a CF clinic and I was referred.

You can order your own sample collection kit and forms directly from Ambry. I did that for testing my daughter Amelia's cord blood. If you call them and tell them what you want I bet they'd try to get it to you or your doctor before your visit. Doesn't hurt to ask.

There are cross infection issues to consider. That's actually a very good reason to get tested since you may culture for bugs and expose your baby. I have no experience with that but I know some people have multiple kids with CF and deal with it. The coughing since May thing could be a bug overgrowth as I'm sure by now you recognize.
 
H

hopesiris

Guest
I asked my prenatal geneticist to do the Ambry full panel since I was pregnant at the time and was seeing him anyway. I explained that I saw information about adult onset CF and I think I have it. He was not familiar with Ambry so I explained that it's the most complete testing available. When the results came in my geneticist consulted with a CF clinic and I was referred.
<br />
<br />You can order your own sample collection kit and forms directly from Ambry. I did that for testing my daughter Amelia's cord blood. If you call them and tell them what you want I bet they'd try to get it to you or your doctor before your visit. Doesn't hurt to ask.
<br />
<br />There are cross infection issues to consider. That's actually a very good reason to get tested since you may culture for bugs and expose your baby. I have no experience with that but I know some people have multiple kids with CF and deal with it. The coughing since May thing could be a bug overgrowth as I'm sure by now you recognize.
<br />
<br />
 
J

Juliet

New member
My CF team set everything up to get my daughter tested after I was DX'd with CF. Her pediatrician didn't think it was worth it because she has no symptoms, but the CF center was able to work everything out. I'm now waiting for the Ambry results to come back in. It's not exactly the same sequence as you're asking about, but I was only DX'd a few months ago. And my daughter is already 13! ~Juliet
 
J

Juliet

New member
My CF team set everything up to get my daughter tested after I was DX'd with CF. Her pediatrician didn't think it was worth it because she has no symptoms, but the CF center was able to work everything out. I'm now waiting for the Ambry results to come back in. It's not exactly the same sequence as you're asking about, but I was only DX'd a few months ago. And my daughter is already 13! ~Juliet
 
J

Juliet

New member
My CF team set everything up to get my daughter tested after I was DX'd with CF. Her pediatrician didn't think it was worth it because she has no symptoms, but the CF center was able to work everything out. I'm now waiting for the Ambry results to come back in. It's not exactly the same sequence as you're asking about, but I was only DX'd a few months ago. And my daughter is already 13! ~Juliet
 
J

Juliet

New member
My CF team set everything up to get my daughter tested after I was DX'd with CF. Her pediatrician didn't think it was worth it because she has no symptoms, but the CF center was able to work everything out. I'm now waiting for the Ambry results to come back in. It's not exactly the same sequence as you're asking about, but I was only DX'd a few months ago. And my daughter is already 13! ~Juliet
 
J

Juliet

New member
My CF team set everything up to get my daughter tested after I was DX'd with CF. Her pediatrician didn't think it was worth it because she has no symptoms, but the CF center was able to work everything out. I'm now waiting for the Ambry results to come back in. It's not exactly the same sequence as you're asking about, but I was only DX'd a few months ago. And my daughter is already 13! ~Juliet
 
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