Hi. I've been reading a lot, and have decided to join. i need some advice from others who have obviously gone through much of what we have. Okay, sorry for the length that this will be. My daughter just turned 12 and she had sweat test this past Friday(8/31). They said we would hear back in a week. It is an accredited hospital for CF. It started at a year old with serious respiratory infections. We've been told asthma, not asthma, asthma agian, etc., reactive airway, allergies (tests proved not), walking pneumonia, more and more respiratory infections, croup, stridor, chronic sinus infections. At this point it's hard to remember everything. At 7, she had her tonsils and adenoids removed. They were too large to have a laryngoscopy and bronchoscopy done(looking for tracheomalacia or an "underdeveloped airway"), not that either. The doctor also said he removed something in her nose, but said it wasn't serious. Well, her adenoids have grown back. She did seem a little better after the tonsilectomy. Not sick as often. Now, 5 years later, we were finally sent to a pulmonoligist. She has put her on zantac, prevacid, singulair, and flovent in addition to her albuterol. Helped, but not too much. Nothing seems to help. Not sure what her lung function tests are, but her doctor said "I can't explain it", so she sent us for the sweat test. She also said that three of her sinus cavities looked "weird". Anyway, I'm exhausted with the trips to the doctor, sleepless nights, and her anger at not being able to play like everyone else. If this isn't CF, and I'm hoping that it's not, does anyone have any other ideas what could be wrong? Thanks in advance. We're desperate for answers!
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Daughter is 12, might have cf... Advice?
- Thread starter cbcmom
- Start date
Hi. I've been reading a lot, and have decided to join. i need some advice from others who have obviously gone through much of what we have. Okay, sorry for the length that this will be. My daughter just turned 12 and she had sweat test this past Friday(8/31). They said we would hear back in a week. It is an accredited hospital for CF. It started at a year old with serious respiratory infections. We've been told asthma, not asthma, asthma agian, etc., reactive airway, allergies (tests proved not), walking pneumonia, more and more respiratory infections, croup, stridor, chronic sinus infections. At this point it's hard to remember everything. At 7, she had her tonsils and adenoids removed. They were too large to have a laryngoscopy and bronchoscopy done(looking for tracheomalacia or an "underdeveloped airway"), not that either. The doctor also said he removed something in her nose, but said it wasn't serious. Well, her adenoids have grown back. She did seem a little better after the tonsilectomy. Not sick as often. Now, 5 years later, we were finally sent to a pulmonoligist. She has put her on zantac, prevacid, singulair, and flovent in addition to her albuterol. Helped, but not too much. Nothing seems to help. Not sure what her lung function tests are, but her doctor said "I can't explain it", so she sent us for the sweat test. She also said that three of her sinus cavities looked "weird". Anyway, I'm exhausted with the trips to the doctor, sleepless nights, and her anger at not being able to play like everyone else. If this isn't CF, and I'm hoping that it's not, does anyone have any other ideas what could be wrong? Thanks in advance. We're desperate for answers!
Hi. I've been reading a lot, and have decided to join. i need some advice from others who have obviously gone through much of what we have. Okay, sorry for the length that this will be. My daughter just turned 12 and she had sweat test this past Friday(8/31). They said we would hear back in a week. It is an accredited hospital for CF. It started at a year old with serious respiratory infections. We've been told asthma, not asthma, asthma agian, etc., reactive airway, allergies (tests proved not), walking pneumonia, more and more respiratory infections, croup, stridor, chronic sinus infections. At this point it's hard to remember everything. At 7, she had her tonsils and adenoids removed. They were too large to have a laryngoscopy and bronchoscopy done(looking for tracheomalacia or an "underdeveloped airway"), not that either. The doctor also said he removed something in her nose, but said it wasn't serious. Well, her adenoids have grown back. She did seem a little better after the tonsilectomy. Not sick as often. Now, 5 years later, we were finally sent to a pulmonoligist. She has put her on zantac, prevacid, singulair, and flovent in addition to her albuterol. Helped, but not too much. Nothing seems to help. Not sure what her lung function tests are, but her doctor said "I can't explain it", so she sent us for the sweat test. She also said that three of her sinus cavities looked "weird". Anyway, I'm exhausted with the trips to the doctor, sleepless nights, and her anger at not being able to play like everyone else. If this isn't CF, and I'm hoping that it's not, does anyone have any other ideas what could be wrong? Thanks in advance. We're desperate for answers!
Hi. I've been reading a lot, and have decided to join. i need some advice from others who have obviously gone through much of what we have. Okay, sorry for the length that this will be. My daughter just turned 12 and she had sweat test this past Friday(8/31). They said we would hear back in a week. It is an accredited hospital for CF. It started at a year old with serious respiratory infections. We've been told asthma, not asthma, asthma agian, etc., reactive airway, allergies (tests proved not), walking pneumonia, more and more respiratory infections, croup, stridor, chronic sinus infections. At this point it's hard to remember everything. At 7, she had her tonsils and adenoids removed. They were too large to have a laryngoscopy and bronchoscopy done(looking for tracheomalacia or an "underdeveloped airway"), not that either. The doctor also said he removed something in her nose, but said it wasn't serious. Well, her adenoids have grown back. She did seem a little better after the tonsilectomy. Not sick as often. Now, 5 years later, we were finally sent to a pulmonoligist. She has put her on zantac, prevacid, singulair, and flovent in addition to her albuterol. Helped, but not too much. Nothing seems to help. Not sure what her lung function tests are, but her doctor said "I can't explain it", so she sent us for the sweat test. She also said that three of her sinus cavities looked "weird". Anyway, I'm exhausted with the trips to the doctor, sleepless nights, and her anger at not being able to play like everyone else. If this isn't CF, and I'm hoping that it's not, does anyone have any other ideas what could be wrong? Thanks in advance. We're desperate for answers!
Hi. I've been reading a lot, and have decided to join. i need some advice from others who have obviously gone through much of what we have. Okay, sorry for the length that this will be. My daughter just turned 12 and she had sweat test this past Friday(8/31). They said we would hear back in a week. It is an accredited hospital for CF. It started at a year old with serious respiratory infections. We've been told asthma, not asthma, asthma agian, etc., reactive airway, allergies (tests proved not), walking pneumonia, more and more respiratory infections, croup, stridor, chronic sinus infections. At this point it's hard to remember everything. At 7, she had her tonsils and adenoids removed. They were too large to have a laryngoscopy and bronchoscopy done(looking for tracheomalacia or an "underdeveloped airway"), not that either. The doctor also said he removed something in her nose, but said it wasn't serious. Well, her adenoids have grown back. She did seem a little better after the tonsilectomy. Not sick as often. Now, 5 years later, we were finally sent to a pulmonoligist. She has put her on zantac, prevacid, singulair, and flovent in addition to her albuterol. Helped, but not too much. Nothing seems to help. Not sure what her lung function tests are, but her doctor said "I can't explain it", so she sent us for the sweat test. She also said that three of her sinus cavities looked "weird". Anyway, I'm exhausted with the trips to the doctor, sleepless nights, and her anger at not being able to play like everyone else. If this isn't CF, and I'm hoping that it's not, does anyone have any other ideas what could be wrong? Thanks in advance. We're desperate for answers!
It sure sounds like CF is a possibility. I'm very surprised it has taken someone this long to suggest testing for it.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
It sure sounds like CF is a possibility. I'm very surprised it has taken someone this long to suggest testing for it.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
It sure sounds like CF is a possibility. I'm very surprised it has taken someone this long to suggest testing for it.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
It sure sounds like CF is a possibility. I'm very surprised it has taken someone this long to suggest testing for it.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
It sure sounds like CF is a possibility. I'm very surprised it has taken someone this long to suggest testing for it.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
My daughter was misdiagnosed as "asthma with productive cough" for 8 years (from age 5 to 13) Although her health problems were not as serious or numerous as your daughter, I feel I can relate.
My big message to everyone in your situation is regarding sweat test numbers - since this was the crooks of my daughter's incorrect diagnosis. Please read my blog page for more details, but the short version is find out what the sweat test number is - do not just settle for "negative" and stop considering CF as a possibility. The chart goes like this:
under 40 = normal/negative
40-59 = borderline
over 60 = positive
My daughter tests out every time at 38. My son at 41. They both have CF. There are <b>MANY</b> people on this website with confirmed genetic tests, who also <b>have sweat test numbers from the teens through 40</b>. (mostly in the 20's and 30's) So be sure and ask if the answer is negative.
You are also way ahead of the game by already being tested as an accredited facility - nice going - that removes a lot of the question going into this too.
I'm a little surprised they say one full week -- a lot of places tell you on the same day or within a day or two -- if you feel like it, give them a call and see if you can't find the answer out a little sooner.
Best wishes - please keep us posted on what they say.
Hi there and welcome. My son wasn't dx until age 15. We were told it was allergies, asthma, etc. He DOES have asthma and allergies, BUT he also has CF. When their symptoms are "mild" and "atypical", CF seems to be overlooked. Especially if there aren't any major weight gain problems (failure to thrive, etc) My son had chronic ear infections, sinus problems, etc. We had several sets of ear tubes put in and aednoids taken out (they grew back too), but never a sweat test. Your symptoms sound very similar to what my son experienced.
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
Hi there and welcome. My son wasn't dx until age 15. We were told it was allergies, asthma, etc. He DOES have asthma and allergies, BUT he also has CF. When their symptoms are "mild" and "atypical", CF seems to be overlooked. Especially if there aren't any major weight gain problems (failure to thrive, etc) My son had chronic ear infections, sinus problems, etc. We had several sets of ear tubes put in and aednoids taken out (they grew back too), but never a sweat test. Your symptoms sound very similar to what my son experienced.
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
Hi there and welcome. My son wasn't dx until age 15. We were told it was allergies, asthma, etc. He DOES have asthma and allergies, BUT he also has CF. When their symptoms are "mild" and "atypical", CF seems to be overlooked. Especially if there aren't any major weight gain problems (failure to thrive, etc) My son had chronic ear infections, sinus problems, etc. We had several sets of ear tubes put in and aednoids taken out (they grew back too), but never a sweat test. Your symptoms sound very similar to what my son experienced.
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
Hi there and welcome. My son wasn't dx until age 15. We were told it was allergies, asthma, etc. He DOES have asthma and allergies, BUT he also has CF. When their symptoms are "mild" and "atypical", CF seems to be overlooked. Especially if there aren't any major weight gain problems (failure to thrive, etc) My son had chronic ear infections, sinus problems, etc. We had several sets of ear tubes put in and aednoids taken out (they grew back too), but never a sweat test. Your symptoms sound very similar to what my son experienced.
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
Hi there and welcome. My son wasn't dx until age 15. We were told it was allergies, asthma, etc. He DOES have asthma and allergies, BUT he also has CF. When their symptoms are "mild" and "atypical", CF seems to be overlooked. Especially if there aren't any major weight gain problems (failure to thrive, etc) My son had chronic ear infections, sinus problems, etc. We had several sets of ear tubes put in and aednoids taken out (they grew back too), but never a sweat test. Your symptoms sound very similar to what my son experienced.
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
It was just a matter of finding the right doc for us. We stumbled (quite literally) onto a pulmo who tested him the first time he met with us. My son's sweat test numbers were very high. If I remember correctly, they were like 74 and 78. As another member here said, there are people here with relatively low sweat results who still have CF. It's not a set in stone method by any means, but for us was a big red flag. I would encourage you to ask for a full panel Ambry genetic test.
I am sorry you are going through this. I hope there is no CF for you, but if there is, this is a great place for support and information. Hang in there and keep us posted on the results.
Stacey
Alyssa, thank you so much for responding. I called the hospital for results and had to leave a message. Haven't heard back yet.
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
Alyssa, thank you so much for responding. I called the hospital for results and had to leave a message. Haven't heard back yet.
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
Alyssa, thank you so much for responding. I called the hospital for results and had to leave a message. Haven't heard back yet.
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
Alyssa, thank you so much for responding. I called the hospital for results and had to leave a message. Haven't heard back yet.
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
Alyssa, thank you so much for responding. I called the hospital for results and had to leave a message. Haven't heard back yet.
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T
I am also surprised that it has taken this long. We were only sent to a pulmonoligist in January. We had been sent to an ear, nose, and throat dr, but noat a pulmonoligist. We've been seeing a new pediatrician for a couple of years, guess they finally ran into a wall. I feel rather naive now for letting it go so long. I just trusted her doctors.
I've just wanted to know why is she sick more than anyone we know? It's usually about every 3-5 weeks. She is sick right now. I was shocked when her doc told us about the sweat test. CF isn't exactly what I expected to hear.
Do children w/cf ever have any ankle or knee pain and swelling? She has that and now I'm wondering if thay could be related to her respiratory problems. Everyone here is so knowledgeable and I'm really learning a lot. Thanks again! T