Siblings with CF

martipeach · Jul 22, 2008

Hi, I have a question for those who have more than one child with CF. I currently have a 2 year-old daughter who was diagnosed with CF at 7 weeks old (due to new born testing). She is pancreatic sufficient and she has never had more than an ear infection. I just found out a few weeks ago that I am expecting again (not entirely planned) but nonetheless we are very excited about a new baby. My husband and I are in the process of deciding whether or not to get an amniocentesis done, we will keep the baby regardless of whether or not if has CF and I am very worried about the risks involved. But anyway, my question is to those who have more than one child with CF are the symptoms displayed in each child the same, or are they different? Can you have one child that is as mild as my daughter and have one that is very severe with the same gene combination? I remember my daughter's pulmonologist telling us that each child is different and each case is different, but then he told us about seeing siblings that displayed the same symptoms. I am very confused!! Please let me know what you have experienced with more than one child. Thank you so much!

martipeach · Jul 22, 2008

Hi, I have a question for those who have more than one child with CF. I currently have a 2 year-old daughter who was diagnosed with CF at 7 weeks old (due to new born testing). She is pancreatic sufficient and she has never had more than an ear infection. I just found out a few weeks ago that I am expecting again (not entirely planned) but nonetheless we are very excited about a new baby. My husband and I are in the process of deciding whether or not to get an amniocentesis done, we will keep the baby regardless of whether or not if has CF and I am very worried about the risks involved. But anyway, my question is to those who have more than one child with CF are the symptoms displayed in each child the same, or are they different? Can you have one child that is as mild as my daughter and have one that is very severe with the same gene combination? I remember my daughter's pulmonologist telling us that each child is different and each case is different, but then he told us about seeing siblings that displayed the same symptoms. I am very confused!! Please let me know what you have experienced with more than one child. Thank you so much!

martipeach · Jul 22, 2008

Hi, I have a question for those who have more than one child with CF. I currently have a 2 year-old daughter who was diagnosed with CF at 7 weeks old (due to new born testing). She is pancreatic sufficient and she has never had more than an ear infection. I just found out a few weeks ago that I am expecting again (not entirely planned) but nonetheless we are very excited about a new baby. My husband and I are in the process of deciding whether or not to get an amniocentesis done, we will keep the baby regardless of whether or not if has CF and I am very worried about the risks involved. But anyway, my question is to those who have more than one child with CF are the symptoms displayed in each child the same, or are they different? Can you have one child that is as mild as my daughter and have one that is very severe with the same gene combination? I remember my daughter's pulmonologist telling us that each child is different and each case is different, but then he told us about seeing siblings that displayed the same symptoms. I am very confused!! Please let me know what you have experienced with more than one child. Thank you so much!

martipeach · Jul 22, 2008

Hi, I have a question for those who have more than one child with CF. I currently have a 2 year-old daughter who was diagnosed with CF at 7 weeks old (due to new born testing). She is pancreatic sufficient and she has never had more than an ear infection. I just found out a few weeks ago that I am expecting again (not entirely planned) but nonetheless we are very excited about a new baby. My husband and I are in the process of deciding whether or not to get an amniocentesis done, we will keep the baby regardless of whether or not if has CF and I am very worried about the risks involved. But anyway, my question is to those who have more than one child with CF are the symptoms displayed in each child the same, or are they different? Can you have one child that is as mild as my daughter and have one that is very severe with the same gene combination? I remember my daughter's pulmonologist telling us that each child is different and each case is different, but then he told us about seeing siblings that displayed the same symptoms. I am very confused!! Please let me know what you have experienced with more than one child. Thank you so much!

martipeach · Jul 22, 2008

Hi, I have a question for those who have more than one child with CF. I currently have a 2 year-old daughter who was diagnosed with CF at 7 weeks old (due to new born testing). She is pancreatic sufficient and she has never had more than an ear infection. I just found out a few weeks ago that I am expecting again (not entirely planned) but nonetheless we are very excited about a new baby. My husband and I are in the process of deciding whether or not to get an amniocentesis done, we will keep the baby regardless of whether or not if has CF and I am very worried about the risks involved. But anyway, my question is to those who have more than one child with CF are the symptoms displayed in each child the same, or are they different? Can you have one child that is as mild as my daughter and have one that is very severe with the same gene combination? I remember my daughter's pulmonologist telling us that each child is different and each case is different, but then he told us about seeing siblings that displayed the same symptoms. I am very confused!! Please let me know what you have experienced with more than one child. Thank you so much!

shea14 · Jul 22, 2008

I personally would not get one done if you are going kepp the child regardless because there are risk factors involved. I would be patient. I only have one cfer but the people I know who have more than one say it is different for each child. There is a family that comes into the haspital who have 3 kids. The 2 oldest barely spent a day in the hospital and the youngest has had multiple surgerys. You never know. Just pray your luck stays the same. And congratulations on your wonderful news!!!!

shea14 · Jul 22, 2008

I personally would not get one done if you are going kepp the child regardless because there are risk factors involved. I would be patient. I only have one cfer but the people I know who have more than one say it is different for each child. There is a family that comes into the haspital who have 3 kids. The 2 oldest barely spent a day in the hospital and the youngest has had multiple surgerys. You never know. Just pray your luck stays the same. And congratulations on your wonderful news!!!!

shea14 · Jul 22, 2008

I personally would not get one done if you are going kepp the child regardless because there are risk factors involved. I would be patient. I only have one cfer but the people I know who have more than one say it is different for each child. There is a family that comes into the haspital who have 3 kids. The 2 oldest barely spent a day in the hospital and the youngest has had multiple surgerys. You never know. Just pray your luck stays the same. And congratulations on your wonderful news!!!!

shea14 · Jul 22, 2008

I personally would not get one done if you are going kepp the child regardless because there are risk factors involved. I would be patient. I only have one cfer but the people I know who have more than one say it is different for each child. There is a family that comes into the haspital who have 3 kids. The 2 oldest barely spent a day in the hospital and the youngest has had multiple surgerys. You never know. Just pray your luck stays the same. And congratulations on your wonderful news!!!!

shea14 · Jul 22, 2008

I personally would not get one done if you are going kepp the child regardless because there are risk factors involved. I would be patient. I only have one cfer but the people I know who have more than one say it is different for each child. There is a family that comes into the haspital who have 3 kids. The 2 oldest barely spent a day in the hospital and the youngest has had multiple surgerys. You never know. Just pray your luck stays the same. And congratulations on your wonderful news!!!!

Mommafirst · Jul 23, 2008

I don't have two with CF, but I wanted to congratulate you on your pregnancy. If knowing won't change your approach, I'd probably forgo the amnio, but make sure that your songrapher knows to look for markers like echogenic bowels thorughout your pregnancy. your doc should make sure you get quite a few ultrasounds to check for this along the way.

I believe that each child is different with CF symptoms, and unfortunately with a 2 year old its not even feasible to say your child has a mild case of CF -- only that thus far she isn't showing CF issues. You just never know with this stupid disease.

I hope you won't have to deal with another CF baby, but I'm sure if your newest addition does have CF you will all figure it out as a family and be just as blessed by this child.

Mommafirst · Jul 23, 2008

I don't have two with CF, but I wanted to congratulate you on your pregnancy. If knowing won't change your approach, I'd probably forgo the amnio, but make sure that your songrapher knows to look for markers like echogenic bowels thorughout your pregnancy. your doc should make sure you get quite a few ultrasounds to check for this along the way.

I believe that each child is different with CF symptoms, and unfortunately with a 2 year old its not even feasible to say your child has a mild case of CF -- only that thus far she isn't showing CF issues. You just never know with this stupid disease.

I hope you won't have to deal with another CF baby, but I'm sure if your newest addition does have CF you will all figure it out as a family and be just as blessed by this child.

Mommafirst · Jul 23, 2008

I don't have two with CF, but I wanted to congratulate you on your pregnancy. If knowing won't change your approach, I'd probably forgo the amnio, but make sure that your songrapher knows to look for markers like echogenic bowels thorughout your pregnancy. your doc should make sure you get quite a few ultrasounds to check for this along the way.

I believe that each child is different with CF symptoms, and unfortunately with a 2 year old its not even feasible to say your child has a mild case of CF -- only that thus far she isn't showing CF issues. You just never know with this stupid disease.

I hope you won't have to deal with another CF baby, but I'm sure if your newest addition does have CF you will all figure it out as a family and be just as blessed by this child.

Mommafirst · Jul 23, 2008

I don't have two with CF, but I wanted to congratulate you on your pregnancy. If knowing won't change your approach, I'd probably forgo the amnio, but make sure that your songrapher knows to look for markers like echogenic bowels thorughout your pregnancy. your doc should make sure you get quite a few ultrasounds to check for this along the way.

I believe that each child is different with CF symptoms, and unfortunately with a 2 year old its not even feasible to say your child has a mild case of CF -- only that thus far she isn't showing CF issues. You just never know with this stupid disease.

I hope you won't have to deal with another CF baby, but I'm sure if your newest addition does have CF you will all figure it out as a family and be just as blessed by this child.

Mommafirst · Jul 23, 2008

I don't have two with CF, but I wanted to congratulate you on your pregnancy. If knowing won't change your approach, I'd probably forgo the amnio, but make sure that your songrapher knows to look for markers like echogenic bowels thorughout your pregnancy. your doc should make sure you get quite a few ultrasounds to check for this along the way.
 
 I believe that each child is different with CF symptoms, and unfortunately with a 2 year old its not even feasible to say your child has a mild case of CF -- only that thus far she isn't showing CF issues. You just never know with this stupid disease.
 
 I hope you won't have to deal with another CF baby, but I'm sure if your newest addition does have CF you will all figure it out as a family and be just as blessed by this child.

Allisa35 · Jul 23, 2008

I'm not a parent, but I have CF and so does my sister. I was diagnosed just after I turned 4. I was diagnosed due to a rectal prolapse. I was also very thin and had foul smelling stools. I remember my mom telling me my diapers were awful and that I was always hungry. I don't really know how my breathing was at that time. My sister, who was 7-8 at the time, had no symptoms of cf. She'll probably kill me for saying this, but she was a bit on the pudgy side when she was a kid. I know she told me that they did the sweat test several times on her because they just couldn't believe that she had cf.

I was one that always took my pills and did my treatments, but she was kind of lax when it came to taking care of herself. I am now 37 and she is 40. Her FEV1 is now lower than mine and she has had many infections over the last several years. They had even mentioned that she should consider being evaluated for a transplant at one time. She does take care of herself now, but it does make me wonder if she would be a bit better now had she taken better care of herself when she was younger. We are both on disability. I do have the the digestion issues that go along with cf and take enzymes. My sister does not. She has never really had the problems with the digestion, but she does have crohn's/ulcerative colitis (she never did get a "for sure" answer on that).

As far as the amnio, I also would suggest not getting it. As far as I know, they can't do anything anyway until the baby is born to start treatment, so why take the risk. That's just my opinion.

Allisa35 · Jul 23, 2008

I'm not a parent, but I have CF and so does my sister. I was diagnosed just after I turned 4. I was diagnosed due to a rectal prolapse. I was also very thin and had foul smelling stools. I remember my mom telling me my diapers were awful and that I was always hungry. I don't really know how my breathing was at that time. My sister, who was 7-8 at the time, had no symptoms of cf. She'll probably kill me for saying this, but she was a bit on the pudgy side when she was a kid. I know she told me that they did the sweat test several times on her because they just couldn't believe that she had cf.

I was one that always took my pills and did my treatments, but she was kind of lax when it came to taking care of herself. I am now 37 and she is 40. Her FEV1 is now lower than mine and she has had many infections over the last several years. They had even mentioned that she should consider being evaluated for a transplant at one time. She does take care of herself now, but it does make me wonder if she would be a bit better now had she taken better care of herself when she was younger. We are both on disability. I do have the the digestion issues that go along with cf and take enzymes. My sister does not. She has never really had the problems with the digestion, but she does have crohn's/ulcerative colitis (she never did get a "for sure" answer on that).

As far as the amnio, I also would suggest not getting it. As far as I know, they can't do anything anyway until the baby is born to start treatment, so why take the risk. That's just my opinion.

Allisa35 · Jul 23, 2008

I'm not a parent, but I have CF and so does my sister. I was diagnosed just after I turned 4. I was diagnosed due to a rectal prolapse. I was also very thin and had foul smelling stools. I remember my mom telling me my diapers were awful and that I was always hungry. I don't really know how my breathing was at that time. My sister, who was 7-8 at the time, had no symptoms of cf. She'll probably kill me for saying this, but she was a bit on the pudgy side when she was a kid. I know she told me that they did the sweat test several times on her because they just couldn't believe that she had cf.

I was one that always took my pills and did my treatments, but she was kind of lax when it came to taking care of herself. I am now 37 and she is 40. Her FEV1 is now lower than mine and she has had many infections over the last several years. They had even mentioned that she should consider being evaluated for a transplant at one time. She does take care of herself now, but it does make me wonder if she would be a bit better now had she taken better care of herself when she was younger. We are both on disability. I do have the the digestion issues that go along with cf and take enzymes. My sister does not. She has never really had the problems with the digestion, but she does have crohn's/ulcerative colitis (she never did get a "for sure" answer on that).

As far as the amnio, I also would suggest not getting it. As far as I know, they can't do anything anyway until the baby is born to start treatment, so why take the risk. That's just my opinion.

Allisa35 · Jul 23, 2008

I'm not a parent, but I have CF and so does my sister. I was diagnosed just after I turned 4. I was diagnosed due to a rectal prolapse. I was also very thin and had foul smelling stools. I remember my mom telling me my diapers were awful and that I was always hungry. I don't really know how my breathing was at that time. My sister, who was 7-8 at the time, had no symptoms of cf. She'll probably kill me for saying this, but she was a bit on the pudgy side when she was a kid. I know she told me that they did the sweat test several times on her because they just couldn't believe that she had cf.

I was one that always took my pills and did my treatments, but she was kind of lax when it came to taking care of herself. I am now 37 and she is 40. Her FEV1 is now lower than mine and she has had many infections over the last several years. They had even mentioned that she should consider being evaluated for a transplant at one time. She does take care of herself now, but it does make me wonder if she would be a bit better now had she taken better care of herself when she was younger. We are both on disability. I do have the the digestion issues that go along with cf and take enzymes. My sister does not. She has never really had the problems with the digestion, but she does have crohn's/ulcerative colitis (she never did get a "for sure" answer on that).

As far as the amnio, I also would suggest not getting it. As far as I know, they can't do anything anyway until the baby is born to start treatment, so why take the risk. That's just my opinion.

Allisa35 · Jul 23, 2008

I'm not a parent, but I have CF and so does my sister. I was diagnosed just after I turned 4. I was diagnosed due to a rectal prolapse. I was also very thin and had foul smelling stools. I remember my mom telling me my diapers were awful and that I was always hungry. I don't really know how my breathing was at that time. My sister, who was 7-8 at the time, had no symptoms of cf. She'll probably kill me for saying this, but she was a bit on the pudgy side when she was a kid. I know she told me that they did the sweat test several times on her because they just couldn't believe that she had cf.
 
 I was one that always took my pills and did my treatments, but she was kind of lax when it came to taking care of herself. I am now 37 and she is 40. Her FEV1 is now lower than mine and she has had many infections over the last several years. They had even mentioned that she should consider being evaluated for a transplant at one time. She does take care of herself now, but it does make me wonder if she would be a bit better now had she taken better care of herself when she was younger. We are both on disability. I do have the the digestion issues that go along with cf and take enzymes. My sister does not. She has never really had the problems with the digestion, but she does have crohn's/ulcerative colitis (she never did get a "for sure" answer on that).
 
 As far as the amnio, I also would suggest not getting it. As far as I know, they can't do anything anyway until the baby is born to start treatment, so why take the risk. That's just my opinion.

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