Kayla was dx at 3 months due to new born screening, we would of known alot sooner but her ped doc told us alot of them come back abnormal thats its probably nothing. We were dealing with heart issues she had two holes in her heart ,are minds were focused on that . Her pediatrician sent us for a sweat test 3 months after she was born ,( should have been sooner) thats when we found out.
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What age was your child at diagnosis?
- Thread starter MargaritaChic
- Start date
Kayla was dx at 3 months due to new born screening, we would of known alot sooner but her ped doc told us alot of them come back abnormal thats its probably nothing. We were dealing with heart issues she had two holes in her heart ,are minds were focused on that . Her pediatrician sent us for a sweat test 3 months after she was born ,( should have been sooner) thats when we found out.
Kayla was dx at 3 months due to new born screening, we would of known alot sooner but her ped doc told us alot of them come back abnormal thats its probably nothing. We were dealing with heart issues she had two holes in her heart ,are minds were focused on that . Her pediatrician sent us for a sweat test 3 months after she was born ,( should have been sooner) thats when we found out.
Kayla was dx at 3 months due to new born screening, we would of known alot sooner but her ped doc told us alot of them come back abnormal thats its probably nothing. We were dealing with heart issues she had two holes in her heart ,are minds were focused on that . Her pediatrician sent us for a sweat test 3 months after she was born ,( should have been sooner) thats when we found out.
Kayla was dx at 3 months due to new born screening, we would of known alot sooner but her ped doc told us alot of them come back abnormal thats its probably nothing. We were dealing with heart issues she had two holes in her heart ,are minds were focused on that . Her pediatrician sent us for a sweat test 3 months after she was born ,( should have been sooner) thats when we found out.
Our oldest was diagnosed at 3 yrs, just one week before our youngest was born. They did a match with her cord blood and were 99% positive that she too had CF.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
Our oldest was diagnosed at 3 yrs, just one week before our youngest was born. They did a match with her cord blood and were 99% positive that she too had CF.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
Our oldest was diagnosed at 3 yrs, just one week before our youngest was born. They did a match with her cord blood and were 99% positive that she too had CF.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
Our oldest was diagnosed at 3 yrs, just one week before our youngest was born. They did a match with her cord blood and were 99% positive that she too had CF.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
Our oldest was diagnosed at 3 yrs, just one week before our youngest was born. They did a match with her cord blood and were 99% positive that she too had CF.
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<br />So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
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<br />So many of you mention a sweat test on your infants. Has so much changed in the last 18 years? Back then they would do a sweat test but usually they could not get an infant to sweat enough to do a reliable reading. Rachel tested borderline until she was a year or so. I think in a years time she'd been tested three or four times. Then due to numerous moves (military) it just kinda got dropped until we returned from Germany and the clinic in Ohio wanted her numbers because they weren't in her records. When I told them what happened they asked if they could run one so they'd have the numbers. She was 10. Yes, all those years she had continued being treated as if she had CF. The doc in Ohio told us that the sweat test was the only true positive screening for CF at that point. So she was finally tested once more. Believe me, we or at least I thought, "oh wouldn't it be wonderful if this test came back negative after all this time, and they were wrong?!" Yes, I know the bloodwork from 10 yrs earlier said otherwise. She'd never been hospitalized up to that point for anything. Never on IV antibiotics. But of course the test did give a true confirmation after all those years.
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M
mneville
Guest
Aidan was diagnosed through newborn screening at 8 days old. He was already showing signs of pancreatic insufficiency. We had no idea we were carriers. Thank God for newborn screening.
Megan
Megan
M
mneville
Guest
Aidan was diagnosed through newborn screening at 8 days old. He was already showing signs of pancreatic insufficiency. We had no idea we were carriers. Thank God for newborn screening.
Megan
Megan
M
mneville
Guest
Aidan was diagnosed through newborn screening at 8 days old. He was already showing signs of pancreatic insufficiency. We had no idea we were carriers. Thank God for newborn screening.
Megan
Megan
M
mneville
Guest
Aidan was diagnosed through newborn screening at 8 days old. He was already showing signs of pancreatic insufficiency. We had no idea we were carriers. Thank God for newborn screening.
Megan
Megan
M
mneville
Guest
Aidan was diagnosed through newborn screening at 8 days old. He was already showing signs of pancreatic insufficiency. We had no idea we were carriers. Thank God for newborn screening.
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<br />Megan
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<br />Megan