CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??
- Thread starter katlynnsmom
- Start date
katlynnsmom
New member
Now I am starting to go through the change environment thing....starting with her bedroom..pulled up carpet and laid down tile.My knees are still sore!!!Put an allergy cover on her mattress and pillow covers.Put filters in the vents in most of the rooms of the house she goes in reg. Got the dye and perfume free washing liqiud.Swiffer sweeper and hand duster. And the hand sanitizer in the bathroom..Washed the curtains, bedding, and put what stuffed animals she still has that I did not bag up in the dryer for awhile to get the dust out. This is a start...maybe taking her out of school and trying to keep her away from illlnesses will help...we will see....
Stay well,
Nora
Stay well,
Nora
katlynnsmom
New member
Now I am starting to go through the change environment thing....starting with her bedroom..pulled up carpet and laid down tile.My knees are still sore!!!Put an allergy cover on her mattress and pillow covers.Put filters in the vents in most of the rooms of the house she goes in reg. Got the dye and perfume free washing liqiud.Swiffer sweeper and hand duster. And the hand sanitizer in the bathroom..Washed the curtains, bedding, and put what stuffed animals she still has that I did not bag up in the dryer for awhile to get the dust out. This is a start...maybe taking her out of school and trying to keep her away from illlnesses will help...we will see....
Stay well,
Nora
Stay well,
Nora
katlynnsmom
New member
Now I am starting to go through the change environment thing....starting with her bedroom..pulled up carpet and laid down tile.My knees are still sore!!!Put an allergy cover on her mattress and pillow covers.Put filters in the vents in most of the rooms of the house she goes in reg. Got the dye and perfume free washing liqiud.Swiffer sweeper and hand duster. And the hand sanitizer in the bathroom..Washed the curtains, bedding, and put what stuffed animals she still has that I did not bag up in the dryer for awhile to get the dust out. This is a start...maybe taking her out of school and trying to keep her away from illlnesses will help...we will see....
Stay well,
Nora
Stay well,
Nora
katlynnsmom
New member
Now I am starting to go through the change environment thing....starting with her bedroom..pulled up carpet and laid down tile.My knees are still sore!!!Put an allergy cover on her mattress and pillow covers.Put filters in the vents in most of the rooms of the house she goes in reg. Got the dye and perfume free washing liqiud.Swiffer sweeper and hand duster. And the hand sanitizer in the bathroom..Washed the curtains, bedding, and put what stuffed animals she still has that I did not bag up in the dryer for awhile to get the dust out. This is a start...maybe taking her out of school and trying to keep her away from illlnesses will help...we will see....
Stay well,
Nora
Stay well,
Nora
katlynnsmom
New member
Now I am starting to go through the change environment thing....starting with her bedroom..pulled up carpet and laid down tile.My knees are still sore!!!Put an allergy cover on her mattress and pillow covers.Put filters in the vents in most of the rooms of the house she goes in reg. Got the dye and perfume free washing liqiud.Swiffer sweeper and hand duster. And the hand sanitizer in the bathroom..Washed the curtains, bedding, and put what stuffed animals she still has that I did not bag up in the dryer for awhile to get the dust out. This is a start...maybe taking her out of school and trying to keep her away from illlnesses will help...we will see....
<br /> Stay well,
<br /> Nora
<br /> Stay well,
<br /> Nora
LisaGreene
New member
Dear Nora,
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
LisaGreene
New member
Dear Nora,
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
LisaGreene
New member
Dear Nora,
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
LisaGreene
New member
Dear Nora,
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
Never Give Up! Don't Let Statistics Rob Your Joy
by Foster Cline, MD and Lisa C. Greene
Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
In summary, wise parents handle statistics and medical predictions by:
. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
LisaGreene
New member
Dear Nora,
<br />You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
<br />
<br />
<br />Never Give Up! Don't Let Statistics Rob Your Joy
<br />by Foster Cline, MD and Lisa C. Greene
<br />
<br />Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
<br />
<br />When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
<br />
<br />Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
<br />
<br />Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
<br />
<br />This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
<br />
<br />The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
<br />
<br />When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
<br />
<br />Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
<br />
<br />As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
<br />
<br />With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
<br />
<br />In summary, wise parents handle statistics and medical predictions by:
<br />. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
<br />. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
<br />. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
<br />. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
<br />. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
<br />. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
<br />
<br />Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
<br />
<br />Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
<br />
<br />
<br />You've gotten alot of good advice here and I second the "second opinion" comments and also the ones that this doctor needs a better bedside manner. Here is an article I posted a while back that might change his tune. Maybe it should be re-titled to "Don't let your doctor rob your joy"... We have found allergy testing to be very helpful in knowing what might be triggering inflammation or sinus stuff. Hang in there!! Lisa
<br />
<br />
<br />Never Give Up! Don't Let Statistics Rob Your Joy
<br />by Foster Cline, MD and Lisa C. Greene
<br />
<br />Answering a child's questions about the course of his or her illness can be difficult. How can parents answer their child's questions with hope if they have not come to a good place themselves? The child will almost always take the parent's cues.
<br />
<br />When a child is first diagnosed with a medical condition, especially a life-threatening one, the first question many parents understandably ask is, "How long does my child have to live?" Medical professionals respond by quoting the statistics.
<br />
<br />Statistically, all illnesses have a somewhat predictable course or an "average life expectancy." But statistics based on the group norms may be very misleading and even disabling when applied to individual children. It's very hard to predict who will be among the many who "beat the odds."
<br />
<br />Historically, medical professionals have been known to advise parents of children with cystic fibrosis not to worry about saving for their children's college education. And parents have been known to lower their expectations concerning their children's performance in school, sports, or other important matters relating to the future and living a "normal" life.
<br />
<br />This lowering of expectations, with its suggestion of a "What's the use?" attitude does a great disservice to children. It encourages them to become both entitled and to feel hopeless within themselves. Achievement and self-image both suffer.
<br />
<br />The average life expectancy for many diseases is increasing at a fairly rapid rate due to medical advances. What might be an accurate statistic today probably won't be tomorrow. While it is important to understand the statistics, it is not helpful to be governed by them. The Nash family knew this to be true:
<br />
<br />When Liz was diagnosed with cystic fibrosis in 1973, her parents were told not to expect her to graduate from high school. She did much more than that. Liz earned a PhD in molecular genetics, interned at Johns Hopkins University and went on to become a research scientist in CF. She also volunteered as a mentor to teens with CF, who struggled with thoughts about their future and medical compliance.
<br />
<br />Liz was optimistic, enthusiastic, and passionate about her life's work and interests. She shunned the limitations imposed by CF. As captain of her college ski team she refused to give up the sport when oxygen became necessary. She simply skied with a backpack filled with portable oxygen tanks.
<br />
<br />As an inspiring individual, Liz was selected to carry the 2002 OlympicTorch through Union Square in San Francisco. Liz died at nearly 33, well past her "statistical average" at the time. Her example and indomitable spirit continues to bring hope to families with CF.
<br />
<br />With many medical conditions, there is a strong correlation between good self-care and longevity. Parents can use statistics to inspire hope and spark an "I can beat this" attitude. Parents who give off positive, "we can beat this" vibes generally raise kids with the same determined spirit. We have met many CF parents and their children who demonstrate this courageous and inspiring attitude.
<br />
<br />In summary, wise parents handle statistics and medical predictions by:
<br />. Emphasizing that significant medical progress is being made in almost all areas, and that health and longevity are increasing for almost all illnesses.
<br />. Realizing that for all individuals, the future is unknown. Many lives are shortened by unexpected illness and traumatic events.
<br />. Encouraging their children to believe that they have every chance of being one of those children "who fall on the high side of the bell curve because you take such good care of yourself."
<br />. Understanding that the quality of a life is measured not by its length, but by the amount of love, accomplishment, and giving that fills it.
<br />. Understanding that worrying about the future and chewing on the mistakes of yesterday rob both today and tomorrow. The resulting hopelessness, negativity, and worry can shorten lives and certainly diminish the quality of life.
<br />. Believing that those who bravely face life's obstacles build a character that not only leads them to be more capable people and leaders, but sets an example that enhances the lives of all with whom they come in contact.
<br />
<br />Excerpt taken from Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs by Foster W. Cline MD and Lisa Greene available in bookstores nationwide and online booksellers including www.amazon.com and www.loveandlogic.com.
<br />
<br />Visit www.ParentingChildrenWithHealthIssues.com for the free stuff.
<br />
<br />
V
valigirl21
Guest
I'm sure its been said, but my son's pft is never very good, and his pulmo has cautioned me into reading too much in to that as it is often largely about technique. His numbers are always around 80 but he doesn't have the process down very well. Second opinion sounds like a superb idea given the unprofessional behavior exhibited by the doc. That's absolutely appalling!!!!! Good luck, and keep us posted. Me and mine will be praying for you and your daughter.
V
valigirl21
Guest
I'm sure its been said, but my son's pft is never very good, and his pulmo has cautioned me into reading too much in to that as it is often largely about technique. His numbers are always around 80 but he doesn't have the process down very well. Second opinion sounds like a superb idea given the unprofessional behavior exhibited by the doc. That's absolutely appalling!!!!! Good luck, and keep us posted. Me and mine will be praying for you and your daughter.
V
valigirl21
Guest
I'm sure its been said, but my son's pft is never very good, and his pulmo has cautioned me into reading too much in to that as it is often largely about technique. His numbers are always around 80 but he doesn't have the process down very well. Second opinion sounds like a superb idea given the unprofessional behavior exhibited by the doc. That's absolutely appalling!!!!! Good luck, and keep us posted. Me and mine will be praying for you and your daughter.
V
valigirl21
Guest
I'm sure its been said, but my son's pft is never very good, and his pulmo has cautioned me into reading too much in to that as it is often largely about technique. His numbers are always around 80 but he doesn't have the process down very well. Second opinion sounds like a superb idea given the unprofessional behavior exhibited by the doc. That's absolutely appalling!!!!! Good luck, and keep us posted. Me and mine will be praying for you and your daughter.
V
valigirl21
Guest
I'm sure its been said, but my son's pft is never very good, and his pulmo has cautioned me into reading too much in to that as it is often largely about technique. His numbers are always around 80 but he doesn't have the process down very well. Second opinion sounds like a superb idea given the unprofessional behavior exhibited by the doc. That's absolutely appalling!!!!! Good luck, and keep us posted. Me and mine will be praying for you and your daughter.