I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!
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Possible CF Baby
- Thread starter Fathertobe
- Start date
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
I'm new to this whole CF thing too, I am a carrier of R17H and my husband a carrier of deltaF508. We have an almost 4yo daughter, and I'm pregnant also. I was never told that I was a carrier when I was pg with DD and we just found all this out. I do not want an amnio, and will have to wait to have this baby tested after birth. As for DD, she doesn't seem to show signs of CF, but does it always show up so young or could she show it sometime down the road?? WE do plan on having her tested soon. Any suggestions? Also, how do I approach my OBGYN that told me that if we have 2 different CF strands, that we dont have anything to worry about?? I'm no doctor, but I know how to do my research!</end quote></div>
First of all your daughter should be tested. Even if she doesnt carry both genes (1 from you & 1 from her dad) in order to have CF, she could be a carrier so why not know this info now. As to what the OBGYN said about having 2 different CF strands. I think he should become more knowledgable. There are many CFers who are born with 1 mutation from their mom & the other from their dad.
Here is a thread so you can get an idea of what members have what combination on this forum. Good Luck!
<a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=14821&highlight_key=y">http://forums.cysticfibrosis.c...=14821&highlight_key=y</a>
Scarlett81
New member
Hi anon,
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
Scarlett81
New member
Hi anon,
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
Scarlett81
New member
Hi anon,
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
As Melissa said you are 100% right for doing your research. I have one df508 and one rare mutation-(sorry, can't recall the name right now!). My biological father and his side has the df508.
Yes, please mention this to your obgyn-give her some info, the foundation's website (cff.org) or maybe something from a cf doctor to show her that her info is wrong. She could misguide other patients in the future seriously for giving them wrong info. If I were a doctor, I'd want to know the correct thing.
ramymiller
New member
Thanks for the info, we are going to get Autumn tested, just waiting to see if husband will be starting new job... i dont want her tested and then be told if she does have it (which i dont think she does) that it's a pre-existing condition... so just a few more weeks .... the only thing since we have found all this out is that we thought back to her first 6months and all the sinus problems she had, always congested and was not able to give her meds b/c of her age... right now the only thing that is remotely a symptom is that it is very hard for her to gain weight.... she will be 4 on April 30th and she only weighs 28lbs. We are both short people and were told that it is normal, but my mother thinks she should weigh more.. we just noticed that she is finally 35 1/2 inches!! and that is a big feat for her... she is a very healthy eater and would eat all day long if you let her, but nothing sticks! lol
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy
ramymiller
New member
Thanks for the info, we are going to get Autumn tested, just waiting to see if husband will be starting new job... i dont want her tested and then be told if she does have it (which i dont think she does) that it's a pre-existing condition... so just a few more weeks .... the only thing since we have found all this out is that we thought back to her first 6months and all the sinus problems she had, always congested and was not able to give her meds b/c of her age... right now the only thing that is remotely a symptom is that it is very hard for her to gain weight.... she will be 4 on April 30th and she only weighs 28lbs. We are both short people and were told that it is normal, but my mother thinks she should weigh more.. we just noticed that she is finally 35 1/2 inches!! and that is a big feat for her... she is a very healthy eater and would eat all day long if you let her, but nothing sticks! lol
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy
ramymiller
New member
Thanks for the info, we are going to get Autumn tested, just waiting to see if husband will be starting new job... i dont want her tested and then be told if she does have it (which i dont think she does) that it's a pre-existing condition... so just a few more weeks .... the only thing since we have found all this out is that we thought back to her first 6months and all the sinus problems she had, always congested and was not able to give her meds b/c of her age... right now the only thing that is remotely a symptom is that it is very hard for her to gain weight.... she will be 4 on April 30th and she only weighs 28lbs. We are both short people and were told that it is normal, but my mother thinks she should weigh more.. we just noticed that she is finally 35 1/2 inches!! and that is a big feat for her... she is a very healthy eater and would eat all day long if you let her, but nothing sticks! lol
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy
I also posted this on another thread, but is there a link where I can find the listing of the mutations and their rank of the most common??
thanks! ~Ramy