I identified with Dana's "grieving" post. Even though my daughter was 14 years old when she was diagnosed, a part of me felt the grieving process because of the possibility of her shortened life span. It is a shock to the system. But we did quickly turn (within minutes) our focus on the positive's as well.
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Progression of symptoms
- Thread starter brematt
- Start date
D
ddawes27
Guest
Brematt,
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
D
ddawes27
Guest
Brematt,
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
D
ddawes27
Guest
Brematt,
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
My 4 1/2 year old son was diagnosed 6 weeks ago. I totally hear what you are saying, I look at my son while he is doing his nebulizer treatment and his vest therapy. I tend to wonder how could he "all of a sudden need all of this?" It is like 2 months ago, everything was fine!! I too was told that he had some mild chest X-Ray changes consistent with CF.......I wonder HOW???.......he has never had pneumonia or even a cough.
I had the same feeling in the first few weeks of doing the nebs and vest. I would ask my son to cough during the therapy and it would be really juicy. (no wonder why!!.......Those treatments are designed to loosen stuff up so it can come out in a juicy cough!) anyways I would freak out over it. I think what happens is you start to read the information you were provided and you start to relate to it. It heightens your awareness of things, where before you would never even think twice about things. I am 5 or 6 weeks into this diagnosis and wonder why I have to do all this stuff when he was fine before. The way I think about it is.......every little thing I do right now........could let my son live for an extra day/month/year/years (I don't know which it will be.......but I want it all!!)
My point is no matter how weird it is now..........believe and do what they say.....are you connected with a CF coordinator/center/etc?.......I could never have done this without our CF Team!..........God love them all!
Keep in touch Brematt........I am right there with you in thought!
Mommy to Dominic....5yrs next week.
Doreen
Ah Brematt
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
Ah Brematt
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
Ah Brematt
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
I was diagnosed at birth (because of salty skin) and so had physio every day. I have worse digestion problems than lung, although as i get older the digestion has smoothed out and i am more aware of how to eat and drink to minimise enzymes for peak nutrition - just listening to the body.
My bigest hint for all CF parents is throw away the TV and playstation, xbox etc.
Your kids really won't miss out on that much, you will spend so much more quality time with them, esp if you are concrened about life expectancy, and they will go outside and exercise which it the most important thing! I should know - Grew up on a farm and no TV until I was 15 - and that's when my hospitalisations started! Lack of activity and alcohol consumption are bad for me, doesn't mean i don't watch tv and drink, but i recognise the ill effects.
I work in a limited exercise environment, on a boat, but at least the salt air is good for me! I try to do breathing exercises etc, make the best of your child's environment, get him to play heaps of sports. I found that if I played lots of sports I could get away with less physio, so that hour of isolation became a social hour and sweat and team/morale building, looking back now that is!
Best of luck.
My CF has been slow to progress. I was diagnosed at 6 months. Part of it is my CF genes and genetic modifiers.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
My CF has been slow to progress. I was diagnosed at 6 months. Part of it is my CF genes and genetic modifiers.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
My CF has been slow to progress. I was diagnosed at 6 months. Part of it is my CF genes and genetic modifiers.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
I've seen many late diagnosis CFers progress slowly and then just BAM! progress quickly. I think much of that has to do with not growing up doing meds. It's a difficult habbit to get into and at some point, the CF just catches up with them.
But a large part is my tenacity. If i don't do meds, I pay royally and my FEV1 will drop 10-20 points in a day or two. My last FEV1 was 95%
I also fought to get myself allergy tested even though my CF doc thought I was in denial about my CF. Turns out I have horrible allergies and my sinus infections have disappeared since treating my allergies. So have my coughing spasms. I went to visit the mind behind the Vest all the way in Minnesota to make sure I was using mine correctly and I had the best version out there. And I read up on the latest developments with CF so I make sure I'm always discussing the latest info with my doc. And with my great lung function, I still visit the doc 4 times a year even if I'm not sick.
Do I have 100% control over my CF? Nope. But do I have a lot of control? You bet your bottom $.
Dana,
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Dana,
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Dana,
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Can you tell me what kind of symptoms your daughter had before she was diagonosed. My son is going back for a second sweat test on Monday. He is 14 months old and weighs about 19lbs. HAs had severe resp infections the first year of his life, and hates to eat. Also has shiny poops. Does that sound like CF to you. Actually I have had two doctors tell me he should be retested now. I really just want you to say it doesn't sound like it.
Thanks
Erin Hoke
Michiel101
New member
I have recently been diagnosed @ 26! I never had any serious problems like lung infections and I have no malnutrition. Only the typical cough many people with CF have and nasal polyps. My polyps have been getting much less aggressive since my 20th or so, I have not had a surgery in years while before my 20th I required surgery every other year to keep the damn things growing out of my nose. I even had cosmetic surgery to fix up my nose. So for all I knew before the diagnosis my complaints were becoming less and less serious...
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
Michiel101
New member
I have recently been diagnosed @ 26! I never had any serious problems like lung infections and I have no malnutrition. Only the typical cough many people with CF have and nasal polyps. My polyps have been getting much less aggressive since my 20th or so, I have not had a surgery in years while before my 20th I required surgery every other year to keep the damn things growing out of my nose. I even had cosmetic surgery to fix up my nose. So for all I knew before the diagnosis my complaints were becoming less and less serious...
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
Michiel101
New member
I have recently been diagnosed @ 26! I never had any serious problems like lung infections and I have no malnutrition. Only the typical cough many people with CF have and nasal polyps. My polyps have been getting much less aggressive since my 20th or so, I have not had a surgery in years while before my 20th I required surgery every other year to keep the damn things growing out of my nose. I even had cosmetic surgery to fix up my nose. So for all I knew before the diagnosis my complaints were becoming less and less serious...
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
I find it hard at my age to accept I have this disease since I probably will have to start using a nebulizer to clear my lungs. I told my doctor's assistant to put the nebulizer on halt because I found it unnecessary since I never had to use one before. But as I have read this forum it becomes clear that my situation can escalate at some point. Starting the treatment can hopefully extend my current health situation as long as possible! Thanks for your stories as they have helped me become more realistic about my condition.
Erin - I wish I could tell you that it doesn't sound like CF! Our daughter's symptoms were digestive, and falling off the growth curve. She was born in the 95 percentiles and by the time of diagnosis was below the 25 percentiles. She was constantly hungry but wasn't growing; distended belly and skinny arms and legs; horrible pain when pooping, and grease spots in her diaper (later when potty training the grease floated in the toilet) SORRY TMI
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Erin - I wish I could tell you that it doesn't sound like CF! Our daughter's symptoms were digestive, and falling off the growth curve. She was born in the 95 percentiles and by the time of diagnosis was below the 25 percentiles. She was constantly hungry but wasn't growing; distended belly and skinny arms and legs; horrible pain when pooping, and grease spots in her diaper (later when potty training the grease floated in the toilet) SORRY TMI
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Erin - I wish I could tell you that it doesn't sound like CF! Our daughter's symptoms were digestive, and falling off the growth curve. She was born in the 95 percentiles and by the time of diagnosis was below the 25 percentiles. She was constantly hungry but wasn't growing; distended belly and skinny arms and legs; horrible pain when pooping, and grease spots in her diaper (later when potty training the grease floated in the toilet) SORRY TMI
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
In restrospect there were lots of little things that could have added up to a dx much sooner. Our state started newborn screening about 18 months ago.
Please follow your doc's advice. You'll see lots of stories on here of exactly the opposite - folks that had to BEG to be tested because they KNEW something was wrong. No one wants the diagnosis but it is better to be identified and treated now. Let us know.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)