Siblings with CF

Alyssa · Jul 23, 2008

Sorry to hear that the doctor made statements that sound confusing... here's what I'm thinking he was talking about... yes, every case is different even with siblings with the same gene combination. So you don't know for sure what you will have to deal with until it happens...that is true for when the 2nd child is born and every day/week/month/year from then on... each child will likely experience some similarities and some differences. Also what tends to happen with siblings is if one of them cultures a certain bacteria (grows it in their lungs) than the other one eventually starts growing that too...but not always! That may have been what he was talking about...also he may have been referring to your children's specific genetic make up causing pancreatic sufficiency... he may have meant that if your first born is pancreatic sufficient than chances are (if your second born has both CF genes) then she/he would likely have a similar presentation of pancreatic sufficiency too.

My kids do happen to be very similar right now. They both are clear of any bugs right now, both do the same treatments, both are pancreatic sufficient etc. Their only difference is in their lung function test numbers and when they started presenting with cough and mucus. This started for our daughter at age 5, but not our son until age 21. Another interesting point is our son has only had one lung infection and our daughter has had something in the neighborhood of 20 (most untreated and undiagnosed because she had been misdiagnosed with asthma only not CF) anyway... she is the one with all the previous lung infections and is more prone to getting them still but yet she has the better lung function numbers when the do their pulmonary lung function tests. Not that it really means anything.. I just find that a curious thing

One cannot really draw any conclusions from it.

Please read my blog for details about my kids. If you have any questions please feel free to send a PM to me.

Alyssa · Jul 23, 2008

Sorry to hear that the doctor made statements that sound confusing... here's what I'm thinking he was talking about... yes, every case is different even with siblings with the same gene combination. So you don't know for sure what you will have to deal with until it happens...that is true for when the 2nd child is born and every day/week/month/year from then on... each child will likely experience some similarities and some differences. Also what tends to happen with siblings is if one of them cultures a certain bacteria (grows it in their lungs) than the other one eventually starts growing that too...but not always! That may have been what he was talking about...also he may have been referring to your children's specific genetic make up causing pancreatic sufficiency... he may have meant that if your first born is pancreatic sufficient than chances are (if your second born has both CF genes) then she/he would likely have a similar presentation of pancreatic sufficiency too.

My kids do happen to be very similar right now. They both are clear of any bugs right now, both do the same treatments, both are pancreatic sufficient etc. Their only difference is in their lung function test numbers and when they started presenting with cough and mucus. This started for our daughter at age 5, but not our son until age 21. Another interesting point is our son has only had one lung infection and our daughter has had something in the neighborhood of 20 (most untreated and undiagnosed because she had been misdiagnosed with asthma only not CF) anyway... she is the one with all the previous lung infections and is more prone to getting them still but yet she has the better lung function numbers when the do their pulmonary lung function tests. Not that it really means anything.. I just find that a curious thing

One cannot really draw any conclusions from it.

Please read my blog for details about my kids. If you have any questions please feel free to send a PM to me.

Alyssa · Jul 23, 2008

Sorry to hear that the doctor made statements that sound confusing... here's what I'm thinking he was talking about... yes, every case is different even with siblings with the same gene combination. So you don't know for sure what you will have to deal with until it happens...that is true for when the 2nd child is born and every day/week/month/year from then on... each child will likely experience some similarities and some differences. Also what tends to happen with siblings is if one of them cultures a certain bacteria (grows it in their lungs) than the other one eventually starts growing that too...but not always! That may have been what he was talking about...also he may have been referring to your children's specific genetic make up causing pancreatic sufficiency... he may have meant that if your first born is pancreatic sufficient than chances are (if your second born has both CF genes) then she/he would likely have a similar presentation of pancreatic sufficiency too.

My kids do happen to be very similar right now. They both are clear of any bugs right now, both do the same treatments, both are pancreatic sufficient etc. Their only difference is in their lung function test numbers and when they started presenting with cough and mucus. This started for our daughter at age 5, but not our son until age 21. Another interesting point is our son has only had one lung infection and our daughter has had something in the neighborhood of 20 (most untreated and undiagnosed because she had been misdiagnosed with asthma only not CF) anyway... she is the one with all the previous lung infections and is more prone to getting them still but yet she has the better lung function numbers when the do their pulmonary lung function tests. Not that it really means anything.. I just find that a curious thing

One cannot really draw any conclusions from it.

Please read my blog for details about my kids. If you have any questions please feel free to send a PM to me.

Alyssa · Jul 23, 2008

Sorry to hear that the doctor made statements that sound confusing... here's what I'm thinking he was talking about... yes, every case is different even with siblings with the same gene combination. So you don't know for sure what you will have to deal with until it happens...that is true for when the 2nd child is born and every day/week/month/year from then on... each child will likely experience some similarities and some differences. Also what tends to happen with siblings is if one of them cultures a certain bacteria (grows it in their lungs) than the other one eventually starts growing that too...but not always! That may have been what he was talking about...also he may have been referring to your children's specific genetic make up causing pancreatic sufficiency... he may have meant that if your first born is pancreatic sufficient than chances are (if your second born has both CF genes) then she/he would likely have a similar presentation of pancreatic sufficiency too.

My kids do happen to be very similar right now. They both are clear of any bugs right now, both do the same treatments, both are pancreatic sufficient etc. Their only difference is in their lung function test numbers and when they started presenting with cough and mucus. This started for our daughter at age 5, but not our son until age 21. Another interesting point is our son has only had one lung infection and our daughter has had something in the neighborhood of 20 (most untreated and undiagnosed because she had been misdiagnosed with asthma only not CF) anyway... she is the one with all the previous lung infections and is more prone to getting them still but yet she has the better lung function numbers when the do their pulmonary lung function tests. Not that it really means anything.. I just find that a curious thing

One cannot really draw any conclusions from it.

Please read my blog for details about my kids. If you have any questions please feel free to send a PM to me.

Alyssa · Jul 23, 2008

Sorry to hear that the doctor made statements that sound confusing... here's what I'm thinking he was talking about... yes, every case is different even with siblings with the same gene combination. So you don't know for sure what you will have to deal with until it happens...that is true for when the 2nd child is born and every day/week/month/year from then on... each child will likely experience some similarities and some differences. Also what tends to happen with siblings is if one of them cultures a certain bacteria (grows it in their lungs) than the other one eventually starts growing that too...but not always! That may have been what he was talking about...also he may have been referring to your children's specific genetic make up causing pancreatic sufficiency... he may have meant that if your first born is pancreatic sufficient than chances are (if your second born has both CF genes) then she/he would likely have a similar presentation of pancreatic sufficiency too.
 
 My kids do happen to be very similar right now. They both are clear of any bugs right now, both do the same treatments, both are pancreatic sufficient etc. Their only difference is in their lung function test numbers and when they started presenting with cough and mucus. This started for our daughter at age 5, but not our son until age 21. Another interesting point is our son has only had one lung infection and our daughter has had something in the neighborhood of 20 (most untreated and undiagnosed because she had been misdiagnosed with asthma only not CF) anyway... she is the one with all the previous lung infections and is more prone to getting them still but yet she has the better lung function numbers when the do their pulmonary lung function tests. Not that it really means anything.. I just find that a curious thing

One cannot really draw any conclusions from it.
 
 Please read my blog for details about my kids. If you have any questions please feel free to send a PM to me.

ReneeP · Jul 23, 2008

Martha,

First of all, Congrats!

I have 2 daughters with CF, both DDF508. They are both "relatively" healthy. My 13 year old has more lung issues and my 9 year old has more sinus and weight issues. So you can see that they are different, despite being sisters and having the same mutations.

That being said, there are certain mutations that are more predictable. Not 100% certain... but generally similar. I am not familiar with Y1014del but going by you saying that she is pancreatic sufficient, I'm assuming it's a milder mutation (Class 3 or 4 maybe?)... If that's the case than you can expect that to be the same in both children. Naturally their illness will not present itself identically... no 2 people will... but with a milder mutation, you can "generally" expect a milder disease. I think you tend to get much more varience when you get into the more severe Class 1 or 2 mutations.

As far as the amnio goes...my opinion differs from most people. I opted to have an amnio with my 2nd daughter even though I would never have considered abortion. I did it for my own mental preparation. With all the raging hormones we have when we give birth, I didn't want to have to deal with a CF diagnosis on top of that. If the diagnosis were going to be made, I wanted to be able to deal with that ahead of time so that by the time she was born I could just focus on loving her and taking care of her...not focus on a new diagnosis. As it turned out she did have CF. It was hard, but I learned about it when I was 18 weeks pregnant... that gave me 22 more weeks to deal with the emotions before I had the baby. I also felt that it prepared us to better monitor the pregnancy for problems (bowel obstructions, etc).

If you have any more questions or just want to talk, feel free to e-mail me.

lindareneepreston@hotmail.com

Good luck, whatever you decide!

ReneeP · Jul 23, 2008

Martha,

First of all, Congrats!

I have 2 daughters with CF, both DDF508. They are both "relatively" healthy. My 13 year old has more lung issues and my 9 year old has more sinus and weight issues. So you can see that they are different, despite being sisters and having the same mutations.

That being said, there are certain mutations that are more predictable. Not 100% certain... but generally similar. I am not familiar with Y1014del but going by you saying that she is pancreatic sufficient, I'm assuming it's a milder mutation (Class 3 or 4 maybe?)... If that's the case than you can expect that to be the same in both children. Naturally their illness will not present itself identically... no 2 people will... but with a milder mutation, you can "generally" expect a milder disease. I think you tend to get much more varience when you get into the more severe Class 1 or 2 mutations.

As far as the amnio goes...my opinion differs from most people. I opted to have an amnio with my 2nd daughter even though I would never have considered abortion. I did it for my own mental preparation. With all the raging hormones we have when we give birth, I didn't want to have to deal with a CF diagnosis on top of that. If the diagnosis were going to be made, I wanted to be able to deal with that ahead of time so that by the time she was born I could just focus on loving her and taking care of her...not focus on a new diagnosis. As it turned out she did have CF. It was hard, but I learned about it when I was 18 weeks pregnant... that gave me 22 more weeks to deal with the emotions before I had the baby. I also felt that it prepared us to better monitor the pregnancy for problems (bowel obstructions, etc).

If you have any more questions or just want to talk, feel free to e-mail me.

lindareneepreston@hotmail.com

Good luck, whatever you decide!

ReneeP · Jul 23, 2008

Martha,

First of all, Congrats!

I have 2 daughters with CF, both DDF508. They are both "relatively" healthy. My 13 year old has more lung issues and my 9 year old has more sinus and weight issues. So you can see that they are different, despite being sisters and having the same mutations.

That being said, there are certain mutations that are more predictable. Not 100% certain... but generally similar. I am not familiar with Y1014del but going by you saying that she is pancreatic sufficient, I'm assuming it's a milder mutation (Class 3 or 4 maybe?)... If that's the case than you can expect that to be the same in both children. Naturally their illness will not present itself identically... no 2 people will... but with a milder mutation, you can "generally" expect a milder disease. I think you tend to get much more varience when you get into the more severe Class 1 or 2 mutations.

As far as the amnio goes...my opinion differs from most people. I opted to have an amnio with my 2nd daughter even though I would never have considered abortion. I did it for my own mental preparation. With all the raging hormones we have when we give birth, I didn't want to have to deal with a CF diagnosis on top of that. If the diagnosis were going to be made, I wanted to be able to deal with that ahead of time so that by the time she was born I could just focus on loving her and taking care of her...not focus on a new diagnosis. As it turned out she did have CF. It was hard, but I learned about it when I was 18 weeks pregnant... that gave me 22 more weeks to deal with the emotions before I had the baby. I also felt that it prepared us to better monitor the pregnancy for problems (bowel obstructions, etc).

If you have any more questions or just want to talk, feel free to e-mail me.

lindareneepreston@hotmail.com

Good luck, whatever you decide!

ReneeP · Jul 23, 2008

Martha,

First of all, Congrats!

I have 2 daughters with CF, both DDF508. They are both "relatively" healthy. My 13 year old has more lung issues and my 9 year old has more sinus and weight issues. So you can see that they are different, despite being sisters and having the same mutations.

That being said, there are certain mutations that are more predictable. Not 100% certain... but generally similar. I am not familiar with Y1014del but going by you saying that she is pancreatic sufficient, I'm assuming it's a milder mutation (Class 3 or 4 maybe?)... If that's the case than you can expect that to be the same in both children. Naturally their illness will not present itself identically... no 2 people will... but with a milder mutation, you can "generally" expect a milder disease. I think you tend to get much more varience when you get into the more severe Class 1 or 2 mutations.

As far as the amnio goes...my opinion differs from most people. I opted to have an amnio with my 2nd daughter even though I would never have considered abortion. I did it for my own mental preparation. With all the raging hormones we have when we give birth, I didn't want to have to deal with a CF diagnosis on top of that. If the diagnosis were going to be made, I wanted to be able to deal with that ahead of time so that by the time she was born I could just focus on loving her and taking care of her...not focus on a new diagnosis. As it turned out she did have CF. It was hard, but I learned about it when I was 18 weeks pregnant... that gave me 22 more weeks to deal with the emotions before I had the baby. I also felt that it prepared us to better monitor the pregnancy for problems (bowel obstructions, etc).

If you have any more questions or just want to talk, feel free to e-mail me.

lindareneepreston@hotmail.com

Good luck, whatever you decide!

ReneeP · Jul 23, 2008

Martha,
 
 First of all, Congrats!
 
 I have 2 daughters with CF, both DDF508. They are both "relatively" healthy. My 13 year old has more lung issues and my 9 year old has more sinus and weight issues. So you can see that they are different, despite being sisters and having the same mutations.
 
 That being said, there are certain mutations that are more predictable. Not 100% certain... but generally similar. I am not familiar with Y1014del but going by you saying that she is pancreatic sufficient, I'm assuming it's a milder mutation (Class 3 or 4 maybe?)... If that's the case than you can expect that to be the same in both children. Naturally their illness will not present itself identically... no 2 people will... but with a milder mutation, you can "generally" expect a milder disease. I think you tend to get much more varience when you get into the more severe Class 1 or 2 mutations.
 
 As far as the amnio goes...my opinion differs from most people. I opted to have an amnio with my 2nd daughter even though I would never have considered abortion. I did it for my own mental preparation. With all the raging hormones we have when we give birth, I didn't want to have to deal with a CF diagnosis on top of that. If the diagnosis were going to be made, I wanted to be able to deal with that ahead of time so that by the time she was born I could just focus on loving her and taking care of her...not focus on a new diagnosis. As it turned out she did have CF. It was hard, but I learned about it when I was 18 weeks pregnant... that gave me 22 more weeks to deal with the emotions before I had the baby. I also felt that it prepared us to better monitor the pregnancy for problems (bowel obstructions, etc).
 
 If you have any more questions or just want to talk, feel free to e-mail me.
 
 lindareneepreston@hotmail.com
 
 Good luck, whatever you decide!

martipeach · Jul 23, 2008

Thank you to everyone that replied, I am finding it very helpful to read your responses. I also wanted to add that the Y1014del gene was identified in my daughter as the first in the world, so that kind of makes me nervous as well because her doctors know nothing about the gene. They told us that G542X was pretty severe, but that it looked like the other was dominant in her case. So I guess we'll just have to wait and see. But anyway, thanks again to all those who wrote back, my husband and I will keep praying for a healthy baby!!

martipeach · Jul 23, 2008

Thank you to everyone that replied, I am finding it very helpful to read your responses. I also wanted to add that the Y1014del gene was identified in my daughter as the first in the world, so that kind of makes me nervous as well because her doctors know nothing about the gene. They told us that G542X was pretty severe, but that it looked like the other was dominant in her case. So I guess we'll just have to wait and see. But anyway, thanks again to all those who wrote back, my husband and I will keep praying for a healthy baby!!

martipeach · Jul 23, 2008

Thank you to everyone that replied, I am finding it very helpful to read your responses. I also wanted to add that the Y1014del gene was identified in my daughter as the first in the world, so that kind of makes me nervous as well because her doctors know nothing about the gene. They told us that G542X was pretty severe, but that it looked like the other was dominant in her case. So I guess we'll just have to wait and see. But anyway, thanks again to all those who wrote back, my husband and I will keep praying for a healthy baby!!

martipeach · Jul 23, 2008

Thank you to everyone that replied, I am finding it very helpful to read your responses. I also wanted to add that the Y1014del gene was identified in my daughter as the first in the world, so that kind of makes me nervous as well because her doctors know nothing about the gene. They told us that G542X was pretty severe, but that it looked like the other was dominant in her case. So I guess we'll just have to wait and see. But anyway, thanks again to all those who wrote back, my husband and I will keep praying for a healthy baby!!

martipeach · Jul 23, 2008

Thank you to everyone that replied, I am finding it very helpful to read your responses. I also wanted to add that the Y1014del gene was identified in my daughter as the first in the world, so that kind of makes me nervous as well because her doctors know nothing about the gene. They told us that G542X was pretty severe, but that it looked like the other was dominant in her case. So I guess we'll just have to wait and see. But anyway, thanks again to all those who wrote back, my husband and I will keep praying for a healthy baby!!

tammykrumrey · Jul 23, 2008

Martha,
Congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> I have two daughters who both have CF, and the way the disease presents itself is somewhat similar in both, in the aspect that they are both PI.
Even though both girls have great lung function, one has some lung damage, and one doesn't. But, the one who does is my older one, and she wasn't dx until she was 14 months old...she went the first year of her life without CPT or having control over caring for the disease. And my younger one was dx at one month old, and properly treated from the get go.
I did not have any tests done to see if my younger one had CF, because I had no intentions of changing anything. Actually, I was already 5 months preg. with her when my older daughter was dx.
Again, congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jul 23, 2008

Martha,
Congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> I have two daughters who both have CF, and the way the disease presents itself is somewhat similar in both, in the aspect that they are both PI.
Even though both girls have great lung function, one has some lung damage, and one doesn't. But, the one who does is my older one, and she wasn't dx until she was 14 months old...she went the first year of her life without CPT or having control over caring for the disease. And my younger one was dx at one month old, and properly treated from the get go.
I did not have any tests done to see if my younger one had CF, because I had no intentions of changing anything. Actually, I was already 5 months preg. with her when my older daughter was dx.
Again, congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jul 23, 2008

Martha,
Congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> I have two daughters who both have CF, and the way the disease presents itself is somewhat similar in both, in the aspect that they are both PI.
Even though both girls have great lung function, one has some lung damage, and one doesn't. But, the one who does is my older one, and she wasn't dx until she was 14 months old...she went the first year of her life without CPT or having control over caring for the disease. And my younger one was dx at one month old, and properly treated from the get go.
I did not have any tests done to see if my younger one had CF, because I had no intentions of changing anything. Actually, I was already 5 months preg. with her when my older daughter was dx.
Again, congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jul 23, 2008

Martha,
Congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> I have two daughters who both have CF, and the way the disease presents itself is somewhat similar in both, in the aspect that they are both PI.
Even though both girls have great lung function, one has some lung damage, and one doesn't. But, the one who does is my older one, and she wasn't dx until she was 14 months old...she went the first year of her life without CPT or having control over caring for the disease. And my younger one was dx at one month old, and properly treated from the get go.
I did not have any tests done to see if my younger one had CF, because I had no intentions of changing anything. Actually, I was already 5 months preg. with her when my older daughter was dx.
Again, congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0">

tammykrumrey · Jul 23, 2008

Martha,
 Congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0"> I have two daughters who both have CF, and the way the disease presents itself is somewhat similar in both, in the aspect that they are both PI.
 Even though both girls have great lung function, one has some lung damage, and one doesn't. But, the one who does is my older one, and she wasn't dx until she was 14 months old...she went the first year of her life without CPT or having control over caring for the disease. And my younger one was dx at one month old, and properly treated from the get go.
 I did not have any tests done to see if my younger one had CF, because I had no intentions of changing anything. Actually, I was already 5 months preg. with her when my older daughter was dx.
 Again, congrats on the new baby<img src="i/expressions/face-icon-small-smile.gif" border="0">

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