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PKU
- Thread starter MaineNature
- Start date
ctalbott0609
New member
I think that sounds a little more like what I was told. The Ped. told me in the beginning that it was a Chloride level(I think she might have been trying to simplify it for me), but I think the TLI thing is what the CF team told me. (I've had so many odd abbreviations thrown at me in the last 4 months lol.) Thanks for adding that!!
ctalbott0609
New member
I think that sounds a little more like what I was told. The Ped. told me in the beginning that it was a Chloride level(I think she might have been trying to simplify it for me), but I think the TLI thing is what the CF team told me. (I've had so many odd abbreviations thrown at me in the last 4 months lol.) Thanks for adding that!!
ctalbott0609
New member
I think that sounds a little more like what I was told. The Ped. told me in the beginning that it was a Chloride level(I think she might have been trying to simplify it for me), but I think the TLI thing is what the CF team told me. (I've had so many odd abbreviations thrown at me in the last 4 months lol.) Thanks for adding that!!
ctalbott0609
New member
I think that sounds a little more like what I was told. The Ped. told me in the beginning that it was a Chloride level(I think she might have been trying to simplify it for me), but I think the TLI thing is what the CF team told me. (I've had so many odd abbreviations thrown at me in the last 4 months lol.) Thanks for adding that!!
ctalbott0609
New member
I think that sounds a little more like what I was told. The Ped. told me in the beginning that it was a Chloride level(I think she might have been trying to simplify it for me), but I think the TLI thing is what the CF team told me. (I've had so many odd abbreviations thrown at me in the last 4 months lol.) Thanks for adding that!!
CT just mandated that CF had to be included in it's Newborn Screening program this month (about time!) Our testing looks for about 30 diseases/disorders. The CF screen we do checks the IRT level (Immunoreactive Trypsinogen, a substance produced by the pancreas). It is not a perfect test, but will catch most babies with CF, since their level is usually elevated. If it's high, a 2nd test is done a couple weeks later and then followed up with a sweat test if needed.
CT just mandated that CF had to be included in it's Newborn Screening program this month (about time!) Our testing looks for about 30 diseases/disorders. The CF screen we do checks the IRT level (Immunoreactive Trypsinogen, a substance produced by the pancreas). It is not a perfect test, but will catch most babies with CF, since their level is usually elevated. If it's high, a 2nd test is done a couple weeks later and then followed up with a sweat test if needed.
CT just mandated that CF had to be included in it's Newborn Screening program this month (about time!) Our testing looks for about 30 diseases/disorders. The CF screen we do checks the IRT level (Immunoreactive Trypsinogen, a substance produced by the pancreas). It is not a perfect test, but will catch most babies with CF, since their level is usually elevated. If it's high, a 2nd test is done a couple weeks later and then followed up with a sweat test if needed.
CT just mandated that CF had to be included in it's Newborn Screening program this month (about time!) Our testing looks for about 30 diseases/disorders. The CF screen we do checks the IRT level (Immunoreactive Trypsinogen, a substance produced by the pancreas). It is not a perfect test, but will catch most babies with CF, since their level is usually elevated. If it's high, a 2nd test is done a couple weeks later and then followed up with a sweat test if needed.
CT just mandated that CF had to be included in it's Newborn Screening program this month (about time!) Our testing looks for about 30 diseases/disorders. The CF screen we do checks the IRT level (Immunoreactive Trypsinogen, a substance produced by the pancreas). It is not a perfect test, but will catch most babies with CF, since their level is usually elevated. If it's high, a 2nd test is done a couple weeks later and then followed up with a sweat test if needed.
MaineNature
New member
Thank you all so much. I've been floundering for months trying to figure this out! She had the second screening which apparently still flagged CF, then sweat test showed 15. I understand that some still have CF with a neg. sweat test. She's maintaining her weight so far. Her ped dropped CF from her list even though she prescribed a nebulizer for her respiratory issues. She also noticed body stiffness which she's testing her parathyroid for calcium issues & is medicating for acid reflux which she thinks is causing the respiratory issues. I think she's barking up the wrong trees & is a little behind the times on the finer points of CF. I wish she could have at least a consultation with a CF center but As I said in another post, I'm just the Grammie so for now I guess I'll have to keep educating myself & keeping a watchful eye. Thanks again to all of you & good luck to all of you.....all these kids are so precious!
MaineNature
New member
Thank you all so much. I've been floundering for months trying to figure this out! She had the second screening which apparently still flagged CF, then sweat test showed 15. I understand that some still have CF with a neg. sweat test. She's maintaining her weight so far. Her ped dropped CF from her list even though she prescribed a nebulizer for her respiratory issues. She also noticed body stiffness which she's testing her parathyroid for calcium issues & is medicating for acid reflux which she thinks is causing the respiratory issues. I think she's barking up the wrong trees & is a little behind the times on the finer points of CF. I wish she could have at least a consultation with a CF center but As I said in another post, I'm just the Grammie so for now I guess I'll have to keep educating myself & keeping a watchful eye. Thanks again to all of you & good luck to all of you.....all these kids are so precious!
MaineNature
New member
Thank you all so much. I've been floundering for months trying to figure this out! She had the second screening which apparently still flagged CF, then sweat test showed 15. I understand that some still have CF with a neg. sweat test. She's maintaining her weight so far. Her ped dropped CF from her list even though she prescribed a nebulizer for her respiratory issues. She also noticed body stiffness which she's testing her parathyroid for calcium issues & is medicating for acid reflux which she thinks is causing the respiratory issues. I think she's barking up the wrong trees & is a little behind the times on the finer points of CF. I wish she could have at least a consultation with a CF center but As I said in another post, I'm just the Grammie so for now I guess I'll have to keep educating myself & keeping a watchful eye. Thanks again to all of you & good luck to all of you.....all these kids are so precious!
MaineNature
New member
Thank you all so much. I've been floundering for months trying to figure this out! She had the second screening which apparently still flagged CF, then sweat test showed 15. I understand that some still have CF with a neg. sweat test. She's maintaining her weight so far. Her ped dropped CF from her list even though she prescribed a nebulizer for her respiratory issues. She also noticed body stiffness which she's testing her parathyroid for calcium issues & is medicating for acid reflux which she thinks is causing the respiratory issues. I think she's barking up the wrong trees & is a little behind the times on the finer points of CF. I wish she could have at least a consultation with a CF center but As I said in another post, I'm just the Grammie so for now I guess I'll have to keep educating myself & keeping a watchful eye. Thanks again to all of you & good luck to all of you.....all these kids are so precious!
MaineNature
New member
Thank you all so much. I've been floundering for months trying to figure this out! She had the second screening which apparently still flagged CF, then sweat test showed 15. I understand that some still have CF with a neg. sweat test. She's maintaining her weight so far. Her ped dropped CF from her list even though she prescribed a nebulizer for her respiratory issues. She also noticed body stiffness which she's testing her parathyroid for calcium issues & is medicating for acid reflux which she thinks is causing the respiratory issues. I think she's barking up the wrong trees & is a little behind the times on the finer points of CF. I wish she could have at least a consultation with a CF center but As I said in another post, I'm just the Grammie so for now I guess I'll have to keep educating myself & keeping a watchful eye. Thanks again to all of you & good luck to all of you.....all these kids are so precious!