Is there a NORM?

anonymous · Feb 20, 2006

I have a 3 year old daughter with CF. She was diagnosed at 9 months via sweat test, but we knew all along due to meconium illeus and poor weight gain (mainly from her docs telling us it was CF related).

Her father has one DF508 gene, and my gene cant be found. Also through blood testing my daughter only shows having one gene(same as my husband). She's the first person I ever knew who has CF. Even though this disease has been living with us for 3 years, were still learning.

Ive read some posts on here talking about preg. women having babies with bowel obstructions. Is that normal for babies with CF? I never thought I would have another baby.. so I never thought to ask any questions beforehand. I am now 22 weeks pregnant with a boy. Im just wondering what to expect this time around. Does anyone know of any studies that have been done citing the chances of 2 births being the same? I hope Im making sense. As if being pregnant alone isnt enough to worry about, here we have to worry about our son going through the same things as our daughter did. Any replies would be great. Again, I really hope all this typing has made sense.
Thanks So Much
Angela

anonymous · Feb 20, 2006

I have a 3 year old daughter with CF. She was diagnosed at 9 months via sweat test, but we knew all along due to meconium illeus and poor weight gain (mainly from her docs telling us it was CF related).

Her father has one DF508 gene, and my gene cant be found. Also through blood testing my daughter only shows having one gene(same as my husband). She's the first person I ever knew who has CF. Even though this disease has been living with us for 3 years, were still learning.

Ive read some posts on here talking about preg. women having babies with bowel obstructions. Is that normal for babies with CF? I never thought I would have another baby.. so I never thought to ask any questions beforehand. I am now 22 weeks pregnant with a boy. Im just wondering what to expect this time around. Does anyone know of any studies that have been done citing the chances of 2 births being the same? I hope Im making sense. As if being pregnant alone isnt enough to worry about, here we have to worry about our son going through the same things as our daughter did. Any replies would be great. Again, I really hope all this typing has made sense.
Thanks So Much
Angela

anonymous · Feb 20, 2006

Hi there, I think I read somewhere that having a child with MI increases the chances of having another with it by a percent or two (not much of an increase) but I honestly don't know of where I read that or how accurate it was. I am guessing that your OB is keeping a close eye on your baby to be prepared in case this baby has MI too?

I am 29 weeks pregnant with #2 right now (my daughter Sydney is 2.5 wcf) and we were in the same position as you guys - one of us carries a DF508 and the other carries a rare mutation that isn't picked up on the common genetic scan tests (Ambry, Genzyme, etc) but we were able to have it identified by Quest (you have probably read about them in other posts on here) as they can find 99% of the mutations. This allowed us to have amnio done bc we wanted to find out ASAP if our baby has CF. This is something you might want to consider doing so you can find out right away when your son is born whether he has it or not.

HTH & Hugs,
Kelli - mom of Sydney 2.5 wcf and Baby Boy nocf due 5/6
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>

anonymous · Feb 20, 2006

Hi there, I think I read somewhere that having a child with MI increases the chances of having another with it by a percent or two (not much of an increase) but I honestly don't know of where I read that or how accurate it was. I am guessing that your OB is keeping a close eye on your baby to be prepared in case this baby has MI too?

I am 29 weeks pregnant with #2 right now (my daughter Sydney is 2.5 wcf) and we were in the same position as you guys - one of us carries a DF508 and the other carries a rare mutation that isn't picked up on the common genetic scan tests (Ambry, Genzyme, etc) but we were able to have it identified by Quest (you have probably read about them in other posts on here) as they can find 99% of the mutations. This allowed us to have amnio done bc we wanted to find out ASAP if our baby has CF. This is something you might want to consider doing so you can find out right away when your son is born whether he has it or not.

HTH & Hugs,
Kelli - mom of Sydney 2.5 wcf and Baby Boy nocf due 5/6
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>

Jane · Feb 20, 2006

Hi Angela,
I wasn't sure what you meant by "studies showing chances that both births are the same". Do you mean both kids have cf or that both cf kids will have the same issues?

Has your son been tested? My second child was tested by amnio. We would have still kept the baby either way, but we wanted to get used to the news before the birth so that the two events were separate for us. Just as no two siblings are the same, no two siblings will have the same health needs, even if they both have cf. Both my boys have different issues and different degrees of health.

The more you know about CF, the more the rules change. There is SO much new research every area of CF care is changing. Its very exciting, but its also frustrating because sometimes its hard to keep up to date. (this forum helps)
Congratulations, enjoy your daughter and your pregnancy!

Jane · Feb 20, 2006

Hi Angela,
I wasn't sure what you meant by "studies showing chances that both births are the same". Do you mean both kids have cf or that both cf kids will have the same issues?

Has your son been tested? My second child was tested by amnio. We would have still kept the baby either way, but we wanted to get used to the news before the birth so that the two events were separate for us. Just as no two siblings are the same, no two siblings will have the same health needs, even if they both have cf. Both my boys have different issues and different degrees of health.

The more you know about CF, the more the rules change. There is SO much new research every area of CF care is changing. Its very exciting, but its also frustrating because sometimes its hard to keep up to date. (this forum helps)
Congratulations, enjoy your daughter and your pregnancy!

miesl · Feb 20, 2006

The child of a two CF carriers has a 25% chance of having CF, 50% chance of being a carrier (no CF, but important to know for future offspring), and a 25% chance of having no CF gene.

Since your daughter has CF, you are both carriers (even if your gene hasn't been identified), and your unborn son has a 25% chance of having CF. Like many who have/know sibling pairs on this site can attest - even siblings who have the same two mutations will not always have the same CF problems. It is important you have your son tested as soon as possible.

miesl · Feb 20, 2006

The child of a two CF carriers has a 25% chance of having CF, 50% chance of being a carrier (no CF, but important to know for future offspring), and a 25% chance of having no CF gene.

Since your daughter has CF, you are both carriers (even if your gene hasn't been identified), and your unborn son has a 25% chance of having CF. Like many who have/know sibling pairs on this site can attest - even siblings who have the same two mutations will not always have the same CF problems. It is important you have your son tested as soon as possible.

savemay · Feb 20, 2006

I have NOT had an amnio done yet. Ive heard awful things about the test, and I havent made the decision for myself yet. I'm still thinking on it. My OB doc is keeping an eye on things with this baby CFwise.

Jane I was talking about the births, and having the same issues, not the odds of #2 having CF. Thanks so much for your input.

Kellie I was recently referred to Quest Diagnostics and am working on getting our insurance to foot that bill. It will work out, just taking some time.

Thanks to all who replied so quickly. Like other moms, im sure, when I get an idea in my head my imagination just takes off with it. I get so worried so easily these days, having people who have been there before definatly helps to ease my worries!
Thanks Again, SO very Much!
Angela

savemay · Feb 20, 2006

I have NOT had an amnio done yet. Ive heard awful things about the test, and I havent made the decision for myself yet. I'm still thinking on it. My OB doc is keeping an eye on things with this baby CFwise.

Jane I was talking about the births, and having the same issues, not the odds of #2 having CF. Thanks so much for your input.

Kellie I was recently referred to Quest Diagnostics and am working on getting our insurance to foot that bill. It will work out, just taking some time.

Thanks to all who replied so quickly. Like other moms, im sure, when I get an idea in my head my imagination just takes off with it. I get so worried so easily these days, having people who have been there before definatly helps to ease my worries!
Thanks Again, SO very Much!
Angela

anonymous · Feb 20, 2006

On another site I read about a person who had a child born with a bowel obstruction caused by meconium illeus and two years later their next child was born with one, too. Both have double delta f508. DS was born with a bowel obstruction and needed emergency surgery. He was tested shorly after birth and his blood tests also showed homozygous delta f508. No family history. Just the luck of the draw. There's a 1 in 4 chance that any other children we decide to have would have CF.

anonymous · Feb 20, 2006

On another site I read about a person who had a child born with a bowel obstruction caused by meconium illeus and two years later their next child was born with one, too. Both have double delta f508. DS was born with a bowel obstruction and needed emergency surgery. He was tested shorly after birth and his blood tests also showed homozygous delta f508. No family history. Just the luck of the draw. There's a 1 in 4 chance that any other children we decide to have would have CF.

julie · Feb 20, 2006

Welcome Angela!!! I posted to you on the other site too. Good luck with Quest, it might take some time-everything in the military does but they will eventually pay for it.

As far as the amnio goes, there have been numerous discussions about such things on the boards before. What it really boils down to is this, since you arleady have a baby with CF, you know there is a 25% chance of son having CF too. The doctors should be aware of that and have the necessary teams and supplies standing by at delivery. They can also monitor for MI via ultrasounds frequently-tricare will pay for extra u/s if there is a "medical need". But you have to ask yourself this question, If you do an amnio and your son has CF, are you going to terminate the pregnancy? If the answer is no, then why bother with the amnio when it carries such risks in itself. If you would consider termination (and to each his own, there is NO judgement and shame on anyone who would judge you), then amnio might be the right decision for you. I don't mean to be a downer, really I don't, but that's the way it makes the most sense to me. Hope I made sense to you.

Good luck with Quest. I'd be very interested to see if they find your mutation. Keep us posted!

julie · Feb 20, 2006

Welcome Angela!!! I posted to you on the other site too. Good luck with Quest, it might take some time-everything in the military does but they will eventually pay for it.

As far as the amnio goes, there have been numerous discussions about such things on the boards before. What it really boils down to is this, since you arleady have a baby with CF, you know there is a 25% chance of son having CF too. The doctors should be aware of that and have the necessary teams and supplies standing by at delivery. They can also monitor for MI via ultrasounds frequently-tricare will pay for extra u/s if there is a "medical need". But you have to ask yourself this question, If you do an amnio and your son has CF, are you going to terminate the pregnancy? If the answer is no, then why bother with the amnio when it carries such risks in itself. If you would consider termination (and to each his own, there is NO judgement and shame on anyone who would judge you), then amnio might be the right decision for you. I don't mean to be a downer, really I don't, but that's the way it makes the most sense to me. Hope I made sense to you.

Good luck with Quest. I'd be very interested to see if they find your mutation. Keep us posted!

anonymous · Feb 20, 2006

Hi Again Julie.. you are just everywhere arent you? Thats wonderful.. Im glad Ive run into you. It really seems you know what youre talking about with CF. The main reason that Ive steered away from an amnio thus far, is because no matter what the results I would not terminate the pregnancy. But, my doctor seems to think I might need one so they could have the appropriate teams on hand for the delivery. Im not sure why they cant have the appropriate teams on hand ANYWAY knowing the history of my daughters birth. WHO KNOWS what the doctor is thinking. Im a little tired of trying to figure that one out.
So Im still sticking with not doing the amnio unless my doctor feels the need is greater than I do. We shall see how that turns out.

I was going over my daughters records from when she was born and her blood work has already been sent to Quest 2 yrs ago. That was the first place it was sent to. With no findings of my gene. My daughters current docs dont know this info though, so Ima try to get them to authorize this blood draw to be sent there, just to see if maybe they have identified my gene in the last 2 years. It's worth a shot!

Angela

anonymous · Feb 20, 2006

Hi Again Julie.. you are just everywhere arent you? Thats wonderful.. Im glad Ive run into you. It really seems you know what youre talking about with CF. The main reason that Ive steered away from an amnio thus far, is because no matter what the results I would not terminate the pregnancy. But, my doctor seems to think I might need one so they could have the appropriate teams on hand for the delivery. Im not sure why they cant have the appropriate teams on hand ANYWAY knowing the history of my daughters birth. WHO KNOWS what the doctor is thinking. Im a little tired of trying to figure that one out.
So Im still sticking with not doing the amnio unless my doctor feels the need is greater than I do. We shall see how that turns out.

I was going over my daughters records from when she was born and her blood work has already been sent to Quest 2 yrs ago. That was the first place it was sent to. With no findings of my gene. My daughters current docs dont know this info though, so Ima try to get them to authorize this blood draw to be sent there, just to see if maybe they have identified my gene in the last 2 years. It's worth a shot!

Angela

julie · Feb 20, 2006

I'm not ever sure how long quest has had this extended panel test out, I don't think it's been 2 years though. I think it's newer, like in the last 12 months or so. Does it say on her labs how many mutations they looked for? You can also call them and ask them to look it up if you are curious about it.

I know what you mean about the amnio and the doctors, ahhhhh military doctors. The worst of the worst! I've only met 1 good one, Mark's last CF doctor in San Diego. Great guy and a BIG Plus, Mark loved the guy. Mark doesn't like doctors so this was rare.

If you don't want the amnio, don't let any doctor, regardless of their reasons, push you into it. They should have a team standing by on call regardless to deal with this and you should be having ultrasounds every few weeks to check for echogenic bowel. If this MTF you are being seen at isn't considered equiped to handle a "high risk" delivery, you have every right to request a delivery somewhere else in the area that is equiped to deal with it and they MUST approve it because of your daughters CF status and the possible complications associated with another CF delivery. Make sure they are keeping a lose eye on the baby's bowel.

Keep us posted,

julie · Feb 20, 2006

I'm not ever sure how long quest has had this extended panel test out, I don't think it's been 2 years though. I think it's newer, like in the last 12 months or so. Does it say on her labs how many mutations they looked for? You can also call them and ask them to look it up if you are curious about it.

I know what you mean about the amnio and the doctors, ahhhhh military doctors. The worst of the worst! I've only met 1 good one, Mark's last CF doctor in San Diego. Great guy and a BIG Plus, Mark loved the guy. Mark doesn't like doctors so this was rare.

If you don't want the amnio, don't let any doctor, regardless of their reasons, push you into it. They should have a team standing by on call regardless to deal with this and you should be having ultrasounds every few weeks to check for echogenic bowel. If this MTF you are being seen at isn't considered equiped to handle a "high risk" delivery, you have every right to request a delivery somewhere else in the area that is equiped to deal with it and they MUST approve it because of your daughters CF status and the possible complications associated with another CF delivery. Make sure they are keeping a lose eye on the baby's bowel.

Keep us posted,

anonymous · Feb 20, 2006

We didn't have a clue that DS had CF. Normal pregnancy. I gave birth a couple weeks early and they though he stooled in the womb, so they had a team from the NICU on hand to suction him out when he was born and kept him overnight. Several doctors (peds & neonatologists) looked him over, said he was fine. About 12 hours after he was born he started hurling nasty green stuff. A few more hours, xrays, lifeflight to a chidlren's hospital in a major city, it was determined he had a bowel obstruction. Tests showed he had CF a few days later. Suprprise! Looking back -- one peds doctor mentioned in passing that he thought DS had a big tummy, maybe mentioned it looked like he was full of stool. And the first time I bottle fed DS shortly after he was born he wolfed down the bottle as if he was starving. Later, realized he never pooped, but figured maybe he did when he was away from us in the NICU or in the nursery. But why SHOULD we have known. Liza

anonymous · Feb 20, 2006

We didn't have a clue that DS had CF. Normal pregnancy. I gave birth a couple weeks early and they though he stooled in the womb, so they had a team from the NICU on hand to suction him out when he was born and kept him overnight. Several doctors (peds & neonatologists) looked him over, said he was fine. About 12 hours after he was born he started hurling nasty green stuff. A few more hours, xrays, lifeflight to a chidlren's hospital in a major city, it was determined he had a bowel obstruction. Tests showed he had CF a few days later. Suprprise! Looking back -- one peds doctor mentioned in passing that he thought DS had a big tummy, maybe mentioned it looked like he was full of stool. And the first time I bottle fed DS shortly after he was born he wolfed down the bottle as if he was starving. Later, realized he never pooped, but figured maybe he did when he was away from us in the NICU or in the nursery. But why SHOULD we have known. Liza

Is there a NORM?

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