I have just recevied the results from my 7mo DS sweat test an d was told he had a mild degree of CF. he has had lung issues since he was 2mo but nothing at all w/ his digestion. what does that mean.. a "mild degree" does he kinda have it?! Besides crying all day and having a severe headache I have been reading all of the topics and have been becoming slowly educated. thank you all for being candid. but once more has anyone one heard of having a "mild degree" of CF. thanks for your time
newly diagnosed 7month old son
- Thread starter momnri
- Start date
I have just recevied the results from my 7mo DS sweat test an d was told he had a mild degree of CF. he has had lung issues since he was 2mo but nothing at all w/ his digestion. what does that mean.. a "mild degree" does he kinda have it?! Besides crying all day and having a severe headache I have been reading all of the topics and have been becoming slowly educated. thank you all for being candid. but once more has anyone one heard of having a "mild degree" of CF. thanks for your time
I have just recevied the results from my 7mo DS sweat test an d was told he had a mild degree of CF. he has had lung issues since he was 2mo but nothing at all w/ his digestion. what does that mean.. a "mild degree" does he kinda have it?! Besides crying all day and having a severe headache I have been reading all of the topics and have been becoming slowly educated. thank you all for being candid. but once more has anyone one heard of having a "mild degree" of CF. thanks for your time
I'm very sorry for your son's diagnosis. This question of degrees of CF has come up in the posts quite frequently lately, it seems. Other people have said it much better than I, but the bottom line is that there is no such thing as a "mild" case of CF. He doesn't kinda have it, although I'm sure you already knew that!
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
I'm very sorry for your son's diagnosis. This question of degrees of CF has come up in the posts quite frequently lately, it seems. Other people have said it much better than I, but the bottom line is that there is no such thing as a "mild" case of CF. He doesn't kinda have it, although I'm sure you already knew that!
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
I'm very sorry for your son's diagnosis. This question of degrees of CF has come up in the posts quite frequently lately, it seems. Other people have said it much better than I, but the bottom line is that there is no such thing as a "mild" case of CF. He doesn't kinda have it, although I'm sure you already knew that!
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
As you read futher though you will discover that there is a HUGE variety in the expressions of CF symptoms and outcomes. Hopefully this will be the case for you and your family. Our daughter was diagnosed 3 months ago. She has not had many of the problems that others have had. But I have educated myself about the many possibilities so that I know what to look for (in a proactive way, not a gloom and doom way).
I know about the crying; I'm not sure that I've missed a day yet, but it does get better, as impossible as that sounds.
Hang in there!
Edited to add: And there isn't a way to determine how severe or mild symptoms will be, and when, so you just have to take it as it comes....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Hi! There is no way to tell how severe or not your child will be by a sweat test or a genetic test for that matter. Even siblings with the same exact two mutations can have very different degrees of cf. I am so sorry to hear of your sons diagnosis. I know how hard it is.....but you will get lots of support hear and learn so much about cf. Things will start looking better.....just give it some time and enjoy your baby!
Carrie
Carrie
Hi! There is no way to tell how severe or not your child will be by a sweat test or a genetic test for that matter. Even siblings with the same exact two mutations can have very different degrees of cf. I am so sorry to hear of your sons diagnosis. I know how hard it is.....but you will get lots of support hear and learn so much about cf. Things will start looking better.....just give it some time and enjoy your baby!
Carrie
Carrie
Hi! There is no way to tell how severe or not your child will be by a sweat test or a genetic test for that matter. Even siblings with the same exact two mutations can have very different degrees of cf. I am so sorry to hear of your sons diagnosis. I know how hard it is.....but you will get lots of support hear and learn so much about cf. Things will start looking better.....just give it some time and enjoy your baby!
Carrie
Carrie
Ok, here are the two short answers:
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
Ok, here are the two short answers:
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
Ok, here are the two short answers:
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
No, he doesn't "kind of have CF"
<b>Yes, there is a difference between mild, moderate & severe</b>
The long answers are:
With the advent of genetic testing and screening it is getting easier to find people with the more "mild" cases -- because they don't always present with all of the more classic CF symptoms.
I don't have the info in front of me at the moment - I'll try and find it for you, but there are definite criteria for labeling someone with CF as mild, moderate or severe. It has to do with many factors such as lung function, infections, hospitalization, and digestive issues.
The good news is he is mild now. That could be the case for many many years to come. Many people are quick to point out that what is mild one day can turn to severe the next and to a certain extent that can be true (not literally one day most of the time) but from what I have learned the majority of the time things gradually changes over time. The stories vary greatly from things like "I was working a lot of hours and just wasn't taking very good care of myself" to things like "I never quite recovered from one infection, continued to loose weight, then got another infection that was resistant to the antibiotics and I never quite recovered to the point I was at before" Progression can and does take years. With many people living very full lives. There are many people on this site who are in their 30's 40's and 50's. I personally know of a man who is 76 years old and still doing quite well.
The glass is half full - as our CF doc always says. Based on the limited information you have stated, I would think you have every reason to believe your son will do quite well for many years, well into his adult life. Although there are no guarantees and no crystal ball the biggest thing he has going for him is early diagnosis and not having any digestive problems -- being able to properly absorb the nutrients and gain weight will help his health tremendously.
The diagnosis of CF can hit a parent (or patient) pretty hard and I'm sorry this is happening. Try and remember many things that you read about may be out of date information and/or may never happen to your child especially if he is pancreatic sufficient. The best thing to do is find a certified CF clinic and good doctor, keep learning all you can and have a positive attitude.
I for one have no problem claiming my kids are "mild" not only do they fit the clinical criteria but I can say based on what I have read from others on this list, we just do not have the issues that many others have dealt with for years. There is a huge difference between having a 18 year old who has only had oral and inhaled antibiotic and the 2 year old who has had multiple stays in the hospital.
You can read my blog for more details about my kids and their health if you are interested.
I wish you well - if I can help in any other way, please let me know.
SnobunnyAK
New member
I am 25 years old now, and have had a fairly mild case of CF all my life untill recently. In the past 7 years my CF has taken a little more controle of me due to some bad choices from my early teens. However, I still have and had CF all my life. (I was diagnosed at 11 months) The mild case means that it's not as difficult to work with and have a handle on. Be thankful that it's not severe! There will be a lot of learing ahead of you, and challenges with your child growing up and trying to get the treatments done when the child doesn't want to. Have some patience with him/her and understand that it's not easy being the one with the CF either. You'll do great!
SnobunnyAK
New member
I am 25 years old now, and have had a fairly mild case of CF all my life untill recently. In the past 7 years my CF has taken a little more controle of me due to some bad choices from my early teens. However, I still have and had CF all my life. (I was diagnosed at 11 months) The mild case means that it's not as difficult to work with and have a handle on. Be thankful that it's not severe! There will be a lot of learing ahead of you, and challenges with your child growing up and trying to get the treatments done when the child doesn't want to. Have some patience with him/her and understand that it's not easy being the one with the CF either. You'll do great!
SnobunnyAK
New member
I am 25 years old now, and have had a fairly mild case of CF all my life untill recently. In the past 7 years my CF has taken a little more controle of me due to some bad choices from my early teens. However, I still have and had CF all my life. (I was diagnosed at 11 months) The mild case means that it's not as difficult to work with and have a handle on. Be thankful that it's not severe! There will be a lot of learing ahead of you, and challenges with your child growing up and trying to get the treatments done when the child doesn't want to. Have some patience with him/her and understand that it's not easy being the one with the CF either. You'll do great!
Momri.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.
Momri.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.
Momri.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.
My son's CF is also mild. It is so mild that he is 12 and just being diagnosed. Has had asthma like symptoms most of his life, and 3 hospitalizations aby age 3 or 3. He has not been hospitalized since than but continued to need stearoids to get rid of infections, neb treatments, antibiotics, stay home from school, and eventually sinus surgery. In fact, the sinus surgery (polyps) is what led us to the CF clinic. It sounds like alot but we have not gone through near as much as some of the families (and I often tear up when I read their post). Your son will probably be sick alot when compared to children who don't have CF or some other major heath issue. However, CF is CF, and later in life his condition may be more sevedre and need more monitoring. For now take a deep breath and one step at a time.