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Help!!! Cystic Fibrosis or Not
- Thread starter posoutlook
- Start date
Posoutlook-
If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
I really hope you find some answers. I feel for you in this situation.
If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
I really hope you find some answers. I feel for you in this situation.
Posoutlook-
If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
I really hope you find some answers. I feel for you in this situation.
If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
I really hope you find some answers. I feel for you in this situation.
Posoutlook-
<br /> If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
<br />"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
<br /> I really hope you find some answers. I feel for you in this situation.
<br /> If I were you, I would be so EXTREMELY frustrated. I can't imagine the rollercoaster you are riding. Personally, I think these sweat tests have way too much room for error. When my daughter recently had sweat testing done, her numbers first came out 32/33, and then dropped almost in half to 18/22. I researched the allowable coefficient of variation and they are only supposed to vary by 3-5%. So then I said to my doctor,
<br />"If her sweat test dropped in half on a whim one time and we're in the clear, how do I know that on any other given day the numbers would double on a whim, and then suddenly we are sure we have cystic fibrosis???" This makes no sense to me. This is precisely the frustration you must feel. I consider these tests UNRELIABLE. (They are only supposed to vary by 3-5%!!!) When are the medical experts going to start cluing in to this more???
<br /> I really hope you find some answers. I feel for you in this situation.
austinchick
New member
I'm a little late to the game here posting, but I have cf and din't get diagnosed until I was 10. Due to these awful sweat tests, my mother went through 10 years of frustration. Taking me everywhere. I had two negative results, and one positive. Genetic testing wasn't advanced enough at the time because I have one common gene DF508, and another not so common at the time. In 1992 they finally identified the other one. I had all of the CF symptoms but doctors were convinced it was just severe allergies and asthma. I'm glad my mom fought for the right diagnoses and I finally got the treatment I needed.
austinchick
New member
I'm a little late to the game here posting, but I have cf and din't get diagnosed until I was 10. Due to these awful sweat tests, my mother went through 10 years of frustration. Taking me everywhere. I had two negative results, and one positive. Genetic testing wasn't advanced enough at the time because I have one common gene DF508, and another not so common at the time. In 1992 they finally identified the other one. I had all of the CF symptoms but doctors were convinced it was just severe allergies and asthma. I'm glad my mom fought for the right diagnoses and I finally got the treatment I needed.
austinchick
New member
I'm a little late to the game here posting, but I have cf and din't get diagnosed until I was 10. Due to these awful sweat tests, my mother went through 10 years of frustration. Taking me everywhere. I had two negative results, and one positive. Genetic testing wasn't advanced enough at the time because I have one common gene DF508, and another not so common at the time. In 1992 they finally identified the other one. I had all of the CF symptoms but doctors were convinced it was just severe allergies and asthma. I'm glad my mom fought for the right diagnoses and I finally got the treatment I needed.
LondonFog214
New member
I do truly understand what you are going through. They give a diagnosis and you are devistated then they take it away, then they are not sure and God knows.In our Doctors we trust...At the beginning of this year my 14 y/o son had a series of acute pancreatitis which landed him in the hospital for about 2 months. He missed about the last 3rd of his 8th grade. He has a history of a chronic cough since age 18 mths, relux as an infant until 9 months old(he threw up everything),chronic bronchitis and pneumonia, dx of allergies and asthma. He saw a cf pulmonologist 5 years ago referred by his ped. and he said that our son's chronic cough was a habitual tick and we needed to verbally correct him and tell him to stop coughing. This guy is head of the cf center in our county and supposedly a God in his field!!! He NEVER sweat tested him or brought up CF. No one ever did until his 2nd pancreatic attack this spring. His GI Dr ordered it and came up positive in a non CF center(98) so it was not recognized. Dna was sent out but several mistakes on the way and after 2 months got a definate 2 mutations of CF. Not realizing it was the same pulmonologist from before because my husband took him to the original visit 5 yrs ago we consulted same doc. After meeting him my husband realized he had seen him before,but gave him the benefit of the doubt. He sweat tested him twice at the "CFF" approved lab and he came up borderline-59 and the dr. refused to say he thought he had CF again and would wait for DNA and not treat until. When DNA came back affirmative he said he wold not treat at all because he said he is "asymptomatic" even though he had recurrent pancreatitis and 72% pft. When our son got his ist 2 positive sweat tests at the "non"CF center our 11 y/o daughter was tested, result 79/81. Once again was not recognized because not certified at CF clinic. She came up negative at cf center 36/39. We Then found out her diagnosis of CF through genetics. She is considered asymptomatic except for reflux, low Vit D, and + staff Aureus. Her pancreas is sufficient as our son's is and she has PFTs THAT ARE BEAUTIFUL. Our son is in for a tune-up right now. It is his 1st and we are trying to learn as much as we can. This has been very tough. We all feel that their doctors failed them. They are at CHOP in Philly now and we are very happy so far. They are both on albuterol puffer, previcid, hypertonic saline and vest. Our son is on a Creon and viokase cocktail. He still has had several bouts of pancreatitis since being on the enzymes. I don't know if anyone has gone through this. I just want them to have some faith and confidence in their healthcare professionals and not 2nd guess. I always felt something wasn't right. I guess a mother always knows. Here is the hint that I wish I knew a long time ago. When I used to nurse him he would put his fingers in my mouth and they were very salty. Who knows to mention that to a ped. They never asked me. I think that should be a question on a babies well visit intake or at least if you have a child with reocurring pulmonary problems. I know they all don't have salty skin because our daughter doesn't but it is a huge clue I could have given them a long time ago. Sometimes the genetics are not always conclusive. We were fotunate to finally get an affirmative which do make things clearer. We are at CHOP in philly and the head pulmonologist told us that they diagnose and treat based off of symptoms when sweat tests and genetics are skewed. Supposedly there is a lot of grey area. But who wants grey when it is your child. You want to know what they have and what do you do. I am right there with ya. Hang in there.
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
LondonFog214
New member
I do truly understand what you are going through. They give a diagnosis and you are devistated then they take it away, then they are not sure and God knows.In our Doctors we trust...At the beginning of this year my 14 y/o son had a series of acute pancreatitis which landed him in the hospital for about 2 months. He missed about the last 3rd of his 8th grade. He has a history of a chronic cough since age 18 mths, relux as an infant until 9 months old(he threw up everything),chronic bronchitis and pneumonia, dx of allergies and asthma. He saw a cf pulmonologist 5 years ago referred by his ped. and he said that our son's chronic cough was a habitual tick and we needed to verbally correct him and tell him to stop coughing. This guy is head of the cf center in our county and supposedly a God in his field!!! He NEVER sweat tested him or brought up CF. No one ever did until his 2nd pancreatic attack this spring. His GI Dr ordered it and came up positive in a non CF center(98) so it was not recognized. Dna was sent out but several mistakes on the way and after 2 months got a definate 2 mutations of CF. Not realizing it was the same pulmonologist from before because my husband took him to the original visit 5 yrs ago we consulted same doc. After meeting him my husband realized he had seen him before,but gave him the benefit of the doubt. He sweat tested him twice at the "CFF" approved lab and he came up borderline-59 and the dr. refused to say he thought he had CF again and would wait for DNA and not treat until. When DNA came back affirmative he said he wold not treat at all because he said he is "asymptomatic" even though he had recurrent pancreatitis and 72% pft. When our son got his ist 2 positive sweat tests at the "non"CF center our 11 y/o daughter was tested, result 79/81. Once again was not recognized because not certified at CF clinic. She came up negative at cf center 36/39. We Then found out her diagnosis of CF through genetics. She is considered asymptomatic except for reflux, low Vit D, and + staff Aureus. Her pancreas is sufficient as our son's is and she has PFTs THAT ARE BEAUTIFUL. Our son is in for a tune-up right now. It is his 1st and we are trying to learn as much as we can. This has been very tough. We all feel that their doctors failed them. They are at CHOP in Philly now and we are very happy so far. They are both on albuterol puffer, previcid, hypertonic saline and vest. Our son is on a Creon and viokase cocktail. He still has had several bouts of pancreatitis since being on the enzymes. I don't know if anyone has gone through this. I just want them to have some faith and confidence in their healthcare professionals and not 2nd guess. I always felt something wasn't right. I guess a mother always knows. Here is the hint that I wish I knew a long time ago. When I used to nurse him he would put his fingers in my mouth and they were very salty. Who knows to mention that to a ped. They never asked me. I think that should be a question on a babies well visit intake or at least if you have a child with reocurring pulmonary problems. I know they all don't have salty skin because our daughter doesn't but it is a huge clue I could have given them a long time ago. Sometimes the genetics are not always conclusive. We were fotunate to finally get an affirmative which do make things clearer. We are at CHOP in philly and the head pulmonologist told us that they diagnose and treat based off of symptoms when sweat tests and genetics are skewed. Supposedly there is a lot of grey area. But who wants grey when it is your child. You want to know what they have and what do you do. I am right there with ya. Hang in there.
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
Discouraged but hopeful
Mom of 2 newly dx CF kids 14 and 11.
LondonFog214
New member
I do truly understand what you are going through. They give a diagnosis and you are devistated then they take it away, then they are not sure and God knows.In our Doctors we trust...At the beginning of this year my 14 y/o son had a series of acute pancreatitis which landed him in the hospital for about 2 months. He missed about the last 3rd of his 8th grade. He has a history of a chronic cough since age 18 mths, relux as an infant until 9 months old(he threw up everything),chronic bronchitis and pneumonia, dx of allergies and asthma. He saw a cf pulmonologist 5 years ago referred by his ped. and he said that our son's chronic cough was a habitual tick and we needed to verbally correct him and tell him to stop coughing. This guy is head of the cf center in our county and supposedly a God in his field!!! He NEVER sweat tested him or brought up CF. No one ever did until his 2nd pancreatic attack this spring. His GI Dr ordered it and came up positive in a non CF center(98) so it was not recognized. Dna was sent out but several mistakes on the way and after 2 months got a definate 2 mutations of CF. Not realizing it was the same pulmonologist from before because my husband took him to the original visit 5 yrs ago we consulted same doc. After meeting him my husband realized he had seen him before,but gave him the benefit of the doubt. He sweat tested him twice at the "CFF" approved lab and he came up borderline-59 and the dr. refused to say he thought he had CF again and would wait for DNA and not treat until. When DNA came back affirmative he said he wold not treat at all because he said he is "asymptomatic" even though he had recurrent pancreatitis and 72% pft. When our son got his ist 2 positive sweat tests at the "non"CF center our 11 y/o daughter was tested, result 79/81. Once again was not recognized because not certified at CF clinic. She came up negative at cf center 36/39. We Then found out her diagnosis of CF through genetics. She is considered asymptomatic except for reflux, low Vit D, and + staff Aureus. Her pancreas is sufficient as our son's is and she has PFTs THAT ARE BEAUTIFUL. Our son is in for a tune-up right now. It is his 1st and we are trying to learn as much as we can. This has been very tough. We all feel that their doctors failed them. They are at CHOP in Philly now and we are very happy so far. They are both on albuterol puffer, previcid, hypertonic saline and vest. Our son is on a Creon and viokase cocktail. He still has had several bouts of pancreatitis since being on the enzymes. I don't know if anyone has gone through this. I just want them to have some faith and confidence in their healthcare professionals and not 2nd guess. I always felt something wasn't right. I guess a mother always knows. Here is the hint that I wish I knew a long time ago. When I used to nurse him he would put his fingers in my mouth and they were very salty. Who knows to mention that to a ped. They never asked me. I think that should be a question on a babies well visit intake or at least if you have a child with reocurring pulmonary problems. I know they all don't have salty skin because our daughter doesn't but it is a huge clue I could have given them a long time ago. Sometimes the genetics are not always conclusive. We were fotunate to finally get an affirmative which do make things clearer. We are at CHOP in philly and the head pulmonologist told us that they diagnose and treat based off of symptoms when sweat tests and genetics are skewed. Supposedly there is a lot of grey area. But who wants grey when it is your child. You want to know what they have and what do you do. I am right there with ya. Hang in there.
<br />
<br />Discouraged but hopeful
<br />Mom of 2 newly dx CF kids 14 and 11.
<br />
<br />Discouraged but hopeful
<br />Mom of 2 newly dx CF kids 14 and 11.