My 7 year old son was diagnosed with mutation S1235R and I was told it was not the typical mutation so it might be more mild than the others-- we just don't know b/c it is so rare. From what I have learned, no matter what mutation- each person is so different and even though some people may have the same mutations, they deal with different issues. Each individual has their own set of unique problems to deal with.
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Mild CF?
- Thread starter flatfordl
- Start date
My 7 year old son was diagnosed with mutation S1235R and I was told it was not the typical mutation so it might be more mild than the others-- we just don't know b/c it is so rare. From what I have learned, no matter what mutation- each person is so different and even though some people may have the same mutations, they deal with different issues. Each individual has their own set of unique problems to deal with.
My 7 year old son was diagnosed with mutation S1235R and I was told it was not the typical mutation so it might be more mild than the others-- we just don't know b/c it is so rare. From what I have learned, no matter what mutation- each person is so different and even though some people may have the same mutations, they deal with different issues. Each individual has their own set of unique problems to deal with.
My 7 year old son was diagnosed with mutation S1235R and I was told it was not the typical mutation so it might be more mild than the others-- we just don't know b/c it is so rare. From what I have learned, no matter what mutation- each person is so different and even though some people may have the same mutations, they deal with different issues. Each individual has their own set of unique problems to deal with.
My 7 year old son was diagnosed with mutation S1235R and I was told it was not the typical mutation so it might be more mild than the others-- we just don't know b/c it is so rare. From what I have learned, no matter what mutation- each person is so different and even though some people may have the same mutations, they deal with different issues. Each individual has their own set of unique problems to deal with.
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Yes, you can have MILD CF. My son was diagnosed at 8 weeks because we had him genetically tested (my husband and I went for fertility treatments and found out that we were both carriers, so we knew our son had a 25% chance of being a CFer).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
Yes, you can have MILD CF. My son was diagnosed at 8 weeks because we had him genetically tested (my husband and I went for fertility treatments and found out that we were both carriers, so we knew our son had a 25% chance of being a CFer).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
Yes, you can have MILD CF. My son was diagnosed at 8 weeks because we had him genetically tested (my husband and I went for fertility treatments and found out that we were both carriers, so we knew our son had a 25% chance of being a CFer).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
Yes, you can have MILD CF. My son was diagnosed at 8 weeks because we had him genetically tested (my husband and I went for fertility treatments and found out that we were both carriers, so we knew our son had a 25% chance of being a CFer).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
I hope this helps,
Jodi (mom to Collin 2.5 years old).
Yes, you can have MILD CF. My son was diagnosed at 8 weeks because we had him genetically tested (my husband and I went for fertility treatments and found out that we were both carriers, so we knew our son had a 25% chance of being a CFer).
<br />
<br />He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
<br />
<br />Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
<br />
<br />I hope this helps,
<br />Jodi (mom to Collin 2.5 years old).
<br />
<br />He actually have a very mild version of CF. His two genes are delta F508 and R117H. When these two genes are paired together, children have very mild versions of CF. My son is pancreatic sufficient (he doesn't have to take any enzymes or vitamins) and has never had a lung issue since being diagnosed (he's 2.5 years old). He always tests positive for staph auereus with the throat culture, but it hasn't been an issue.
<br />
<br />Do you know your child's gene make-up? If you have that info., you can do some online research to see if your child will have a "mild form". Most doctors are wary to say that a child has a "mild" form, because nobody can really predict how CF will manifest in your child. They can only make their best guess based on current research. So...given the current research on my son's mutations, he will MOST likely have a very mild form of CF.
<br />
<br />I hope this helps,
<br />Jodi (mom to Collin 2.5 years old).
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>flatfordl</b></i>
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>flatfordl</b></i>
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>flatfordl</b></i>
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote></div>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>flatfordl</b></i>
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
</end quote>
I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
Peace.
MicheleGazelle
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>flatfordl</b></i>
<br />
<br />My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
<br />
<br /></end quote>
<br />
<br />I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
<br />
<br />
<br />I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
<br />
<br />If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
<br />
<br />I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
<br />
<br />Peace.
<br />
<br />
<br />My question is do any of you or your children have mild CF? The doc told us the percentages are low for mild CF. I was just curious and slightly hopeful.
<br />
<br /></end quote>
<br />
<br />I was diagnosed shortly before I turned 36. My oldest son was diagnosed the following month at age 14. Until I began hanging out on CF lists (where I was basically attacked for saying we had "mild" CF), I always described our condition as "mild CF". These days, I usually say we have "atypical CF" when I am posting online to a group like this where folks are familiar with CF. I still sometimes tell people I meet in person that "I have a relatively recently discovered, relatively mild form of CF". "Mild" CF is kind of a hot button from what I have seen. It's hard to know what someone means by that.
<br />
<br />
<br />I will say that my son is now 21 and has not been on antibiotics in over 10 years and hasn't taken any medication at all for about 2 years. I was extremely ill when I was first diagnosed, which is why I got tested for it after a lifetime of health problems. I have gotten off 8 or so prescription drugs and the hole in my left lung has closed. We have worked very hard for the health gains we've seen since finally being diagnosed. I know that different genes present differently, but my experience makes me feel that too much emphasis is put on that aspect of it and not enough emphasis is put on our own power to make life choices and influence our own health outcomes. The folks I know who are seeing better than average outcomes all have done some research on diet and generally reject the high fat diet promoted by most CF clinics. They generally emphasize eating healthy. Their opinions on what is "healthy" varies some but their commitment to a healthy diet does not. Diet, nutritional supplements, and lifestyle changes is how my son and I have walked away from so many drugs and so much suffering, something doctors told me could not be escaped.
<br />
<br />If you continue taking aggressively good care of your child and continue educating yourself about how the body works and what is effective for your child, I think your child can have a far better outcome than the doctors are trying to tell you to accept as inevitable. I know a couple of people with CF (online) who are in their 70's. One of them was born with meconium ileus (sp?), premature....etc. In other words really severe CF. She's still alive in part because she eats well, she does a lot of research and is very proactive. She sounds like she has had a very full, adventurous life and still has things to look forward to.
<br />
<br />I would encourage you to look for examples of people who are doing better than average and wonder what they are doing differently rather than accept the mantra that "your child will inevitably get sicker and sicker because it's the normal progression of CF". And also spend a lot of time wondering what you are doing right and try to build on that. That's where I started and as my understanding of what was working grew, I was able to make yet more improvements. It has led to dramatic improvements in my health that I never expected. My only goal was to take less medication because the drug side effects were so crippling. I am now down to one medication and I believe that eventually I will be completely off medication.
<br />
<br />Peace.
<br />
Wow...good for you. Taking a hold of "your" life like that!
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
Wow...good for you. Taking a hold of "your" life like that!
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
Wow...good for you. Taking a hold of "your" life like that!
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
Wow...good for you. Taking a hold of "your" life like that!
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
Time will tell.
Thanks for your reply.
Always remaining hopeful yet realistic,
Lynsey
Wow...good for you. Taking a hold of "your" life like that!
<br />
<br />At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
<br />
<br />Time will tell.
<br />
<br />Thanks for your reply.
<br />
<br />Always remaining hopeful yet realistic,
<br />Lynsey
<br />
<br />
<br />
<br />At this point we will continue all of her treatments and meds. She most definitely will always need enzymes, vitamins, miralax and prevacid. But as for the respirtory meds and treatments we will see. If five years from now her lungs and sinus are still healthy and her bronchs still show no mucus or damange, I will begin to wonder why we are puting her through it. That will be a total of 8 1/2 years of no symptoms.
<br />
<br />Time will tell.
<br />
<br />Thanks for your reply.
<br />
<br />Always remaining hopeful yet realistic,
<br />Lynsey
<br />
<br />