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How to tell kids that mom has CF
- Thread starter shaunnajw
- Start date
<P>My sister will be returning home from Mayo Clinic with a new discovery of CF. She has a 16 year old, 13 year old, and a 9 year old (all girls). Do you have any advice or know of anywhere I can find resources on how to tell the kids about her diagnosis?</P>
<P>Thanks<BR></P>
<P>Thanks<BR></P>
First of all give your sister our best wishes and let her know she is obviously welcome here.
Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
First of all give your sister our best wishes and let her know she is obviously welcome here.
Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
First of all give your sister our best wishes and let her know she is obviously welcome here.
<br />
<br />Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
<br />
<br />However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
<br />
<br />A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
<br />
<br />In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
<br />
<br />CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
<br />
<br />
<br />Beyond that, I can't tell her how to answer this; hopefully a few of our adults w/CF that have kids can give you their input.
<br />
<br />However, as the father of teens I can tell you probably my 1st thought would be for her to be honest about the diagnosis as they hear EVERYTHING and they are going to her the name CF pretty quick. More importantly, is going to be a strong warning about believing everything you find on google; and that CF is different for everyone.
<br />
<br />A quick google by one of her kids is going to tell them mom has (what they will interpret as life expectancy) of mid-30's and think she is dying any day. Obviously, being diagnosed at 35 means she is probably not at death's door and will 'beat' the 36 you will find online.
<br />
<br />In all reality, without more information there is no way tell what her future holds but strictly as a father my biggest concern would be balancing the changes that are coming in the way of treatments and medications vs addressing the 'ghosts' that will breed in their own minds without information.
<br />
<br />CF is a disease that takes kids as young as grade-school; and adults that live into their 50's+. I would read and learn as much as possible and realize this is going to be a family learning process.
<br />
Yes, best wishes to your sister. I have first hand experience with this. I was recently diagnosed in April with CF. I am 55 and have a 18 year old. She knew I have had lung problems all my life - she was used to me coughing and being out of breath - so although the diagnosis was a surprise, it was a relief to know why I was declining the past few years.
We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
I hope this helps.
We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
I hope this helps.
Yes, best wishes to your sister. I have first hand experience with this. I was recently diagnosed in April with CF. I am 55 and have a 18 year old. She knew I have had lung problems all my life - she was used to me coughing and being out of breath - so although the diagnosis was a surprise, it was a relief to know why I was declining the past few years.
We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
I hope this helps.
We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
I hope this helps.
Yes, best wishes to your sister. I have first hand experience with this. I was recently diagnosed in April with CF. I am 55 and have a 18 year old. She knew I have had lung problems all my life - she was used to me coughing and being out of breath - so although the diagnosis was a surprise, it was a relief to know why I was declining the past few years.
<br />
<br />We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
<br />
<br />Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
<br />
<br />I hope this helps.
<br />
<br />We found several YouTube videos on CF. There is one in particular that we liked - search "Cystic Fibrosis Animation". My daughter learned about the disease in her Biology class so she knew quite a bit but she thought this video explained it well especially for younger kids.
<br />
<br />Understanding what I am going through makes it a bit less scary for her. When she is here (she is a freshman at college) she is my "assistant" (giving my husband a much needed break), helping me organize my medicines, going up & down the stairs for me, running errands, etc. It gives her a sense of control and feels like she is contributing. We just take it one day at a time.
<br />
<br />I hope this helps.
It is also important to note that your sisters children are, at least, carriers of one CF mutation and could in fact have CF as well. Both of your parents were/are CF carriers therefore you could be a carrier or in fact have CF as well.
I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
Bill
I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
Bill
It is also important to note that your sisters children are, at least, carriers of one CF mutation and could in fact have CF as well. Both of your parents were/are CF carriers therefore you could be a carrier or in fact have CF as well.
I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
Bill
I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
Bill
It is also important to note that your sisters children are, at least, carriers of one CF mutation and could in fact have CF as well. Both of your parents were/are CF carriers therefore you could be a carrier or in fact have CF as well.
<br />
<br />I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
<br />
<br />Bill
<br />
<br />I would strongly urge all of you (and any brothers and sisters you may have) to have a FULL CF SEQUENCING done. Some mutations do tend to "late onset" CF.
<br />
<br />Bill
Thank you all for your suggestions and support. After spending the last 3 days obsessively researching CF, I am comforted and more scared at the same time. In regards to my sister, I am comforted. Over the last six years she has gone from being a healthy, active mother to someone who rarely gets out of bed except to attend doctor's appointments-wondering what's wrong with her and acting like she's expecting to die soon. I am hopeful that the correct diagnosis and correct treatments will lead to a dramatic improvement.
I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
Thank you all for your suggestions and support. After spending the last 3 days obsessively researching CF, I am comforted and more scared at the same time. In regards to my sister, I am comforted. Over the last six years she has gone from being a healthy, active mother to someone who rarely gets out of bed except to attend doctor's appointments-wondering what's wrong with her and acting like she's expecting to die soon. I am hopeful that the correct diagnosis and correct treatments will lead to a dramatic improvement.
I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
Thank you all for your suggestions and support. After spending the last 3 days obsessively researching CF, I am comforted and more scared at the same time. In regards to my sister, I am comforted. Over the last six years she has gone from being a healthy, active mother to someone who rarely gets out of bed except to attend doctor's appointments-wondering what's wrong with her and acting like she's expecting to die soon. I am hopeful that the correct diagnosis and correct treatments will lead to a dramatic improvement.
<br />I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
<br />Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
<br />I am, however, scared for myself. I was always the "sickly" one of the family growing up, and now knowing that her diagnosis is a genetic one I am pretty worried. I decided right away that I wanted the sweat test done as well as the genetic testing, and planned to have one of the docs I work with order it (thinking I could have results back in a day and ease my mind). After calling around to the largest hospital in my state, I was told that the sweat test is "out of date and not done anymore." I've researched enough to know that this is absolutely incorrect, but that's what you get when you live in Wyoming. I guess I will just have to wait until my sister's genetic testing comes back and then get tested for her mutations, as I can't afford the full genetic analysis.
<br />Thank you so much to everyone on this forum-I have spent the whole day reading various threads.
imported_Momto2
New member
shauunnajw. If I were you I'd push for a sweat test and a genetic test. I think you are right on in your thinking.
I am sorry to hear about your sister, but I think a diagnosis will only help her. It is not that uncommon in CF to have periods in your life where you are "more well" or "much sicker". Minor genes getting turned on or off, hormones, who knows. I hope she will be on the upswing soon. She might want to get her kids tested too.
I am sorry to hear about your sister, but I think a diagnosis will only help her. It is not that uncommon in CF to have periods in your life where you are "more well" or "much sicker". Minor genes getting turned on or off, hormones, who knows. I hope she will be on the upswing soon. She might want to get her kids tested too.
imported_Momto2
New member
shauunnajw. If I were you I'd push for a sweat test and a genetic test. I think you are right on in your thinking.
I am sorry to hear about your sister, but I think a diagnosis will only help her. It is not that uncommon in CF to have periods in your life where you are "more well" or "much sicker". Minor genes getting turned on or off, hormones, who knows. I hope she will be on the upswing soon. She might want to get her kids tested too.
I am sorry to hear about your sister, but I think a diagnosis will only help her. It is not that uncommon in CF to have periods in your life where you are "more well" or "much sicker". Minor genes getting turned on or off, hormones, who knows. I hope she will be on the upswing soon. She might want to get her kids tested too.