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Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
- Thread starter AlexsMom
- Start date
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
If you are trying to get your question to the Ambry guy, you need to click on the very top post "Welcome Ambry Genetics" and post on there - you don't need to create a new heading, just hit reply on the last page and ask away -- he'll answer you on there.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Thank-you for that. I messed it up-Since Alexandra's sweats were so low and we are seeing the immunologist Thursday, there has been no procative help in clearing her chest daily other than doing breathing treatments-The train of thought has been this is not CF and we will no treat it like CF as far as my pulmonolgist -but my new pediatrician did tell me that after my visit w/ the immuno.doc. and his findings, we would certainly implement whatever to help her because she presents w/CF like symptoms- I had asked my pulmonologist's nurse 2 months ago about the chest physiotherapy and other things I could do to help Alexandra clear her chest easier w/out the albuterol/or xenopex(we're using that now) and they obviously would not go there yet. I know Pulmo's nurse speaks for him when she shouldn't, I've already addressed that,. ANYWAY-Here's what I need to know-do your childen work harder to breathe all the time,do they normally have constant retractions in their chest wall,or do you get it all cleared out everyday and start again the next mornig-do you use neb.treatmnts.everyday or does the chest therapy replace that? Is your goal as a parent to clear the chest so breathing is not labored at all- For me to do that w/my current knowledge, it takes 2 Xenopex and about 4 hours of coughing,sometimes after that she is fine all day,every once in a while she can go for one more day w/no retracting or fast breathing, but normally I must do that every day- I've tried to let her cough it up on her own, but she can't it's stuck- what is your everyday existence? Please help me to help her. Thank-you for your time.
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Low sweat test values- 7 & 8- possible to be that low and still find CF in the Ambry Amplified test?
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH
Alexsmom,
One Cf doc told us the goal for a CF child is to have them be as close to "normal" as we can get. That means in terms of weight, symptoms(coughing) and activity. When my daughter was sick and up coughing at night, the CF doc we were seeing at the time said"Your daughter is not getting what she needs" Meaning the treatment we were doing was not working, we needed another plan of action. I feel your worry, in your post, I can tell you are wracking your brain.
I can give you our experience with our daughter, but remember CF is VERY individual. Eachchild is different. My daughter is 4 1/2 with CF and when she is not sick; she DOES NOT cough. She does not have wheezing or shortness of breath whenshe is NOT sick. BUT, we do nebs everyday; albuterol, pulmicort, hypertonic saline and pulmozyme with VEST(airway clearance) 3 times a day. She is active and runs and plays(sometimes she tires out before other kids) She is in the 75% for weight and 50% for height, but only because she takes pancreatic enzymes with food and s ona high fat/high cal diet. She eats ALOT.
When maggie gets sick with an upper respiratory infection; she can cough so much she pukes, her weight will start to go down and energy will go down. When this happens I call her Cf doc and put her on the appropriate antibiotic for the Cf bacteria she may culture in her sputum. We up her breathing treatments and VEST and usually she gtes better in a week or 2. One time she got so sick she needed IV antibiotics in the hospital by a PICC line for a few weeks. But she did get better after that.
I feel for you, I hope the docs can help your daughter, HTH