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i am confused

R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
R

raysmama

New member
my son ray is 2 months old and they found the mutated cf gene in him newborn screening so i was tested and i am positive for the gene . his sweat test came out 64 not to high. but he has none of the signs that i was told to watch out for but the doc still put him on meds and the nebulizer as a precatuion.could the doctor be making a mistake my son is 16 lbs and 24 inches long at 2months and has an enormuos apitite. and his lungs have been clear every doctors visit . help i am so scared.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
O

okok

New member
Wow it sounds like your son is doing great and growing like a weed!! I know it is scary but your son is healthy now and if he has CF there is a lot that you can do to keep him healthy.

It is certainly possilble your son has CF. 64 is actually a positive result on most sweat test "scales" although sweat chloride can be elevated in newborns (i think that is just the first day or two though). It is not uncommon for symptoms to develop much later than two months. Some kids don't have any digestive symptoms until a year or so and lung issues may not really show up until much, much later in life since CFers are born with healthy lungs and damage occurs after infections. It is also possible your son is just a carrier if i am understanding your post correctly. I think it is great the doctor's are treating him just in case though. Are they doing genetic testing to try to find the other mutation. Are they waiting until then to make a diagnosis? Some people with positive sweat tests are diagnosed when only 1 mutation is known although i guess they probably have symptoms.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
R

raysmama

New member
i was told by the doctor that when they did his stool sample he has some of his own enzymes and that i only need to give them to him 3 times a day. but i feel so babd that he had to be forced to go on baby food so young. if he is just a carrier do you think they will take him off the meds.
 
K

ktsmom

New member
I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!
 
K

ktsmom

New member
I know how scared you are. I want to help answer your questions but I can't tell by your post if they are doing futher genetic testing on your son to see if both of his CFTR genes are mutated. I agree that 64 is basically considered a positive sweat test result.

Curious as to why they put him on baby food already?

My daughter (who carries two copies of the delfa f508 mutation) hung on pretty good until about age 2, but then she really began to fall off her growth curve. She still does not have any lung issues to speak of.

As scary as all of this may seem it will be best once you get some answers - then there are so many things you can do to keep him healthy. Let us know!
 
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