I can't believe this!!!!!

M

momofchris

New member
After being told my sons sweat test result was 50 (by a nurse) we are told she read the amount not the result. The real result was 10. So we got happy real quick. We had a bronc sched. already in Knoxville so we took him for this and the doctor said he had some secretions {poss. because it was early in the morning)and everything looked okay. They sent his lung fuild for a culture. We came back home and Christopher was still whezzing and breathing bad, but we were sure it was nothing to worry about. Then the doctor calls with his culutre result..... He grew out pseudomonas and bordtella (sorry if these are spelled wrong). So they put him on bactrium and sched. him for the cf DNA test.. His regular doctor also decided to do the immunogloblin test--this turned out neg. Help me please.. from what I have read pseudomonas is found in cf kids and people who are sick (immune problems)??? and the same goes for the bordetella. Has anyone dealt with this?
thanks for listening...
 
M

momofchris

New member
After being told my sons sweat test result was 50 (by a nurse) we are told she read the amount not the result. The real result was 10. So we got happy real quick. We had a bronc sched. already in Knoxville so we took him for this and the doctor said he had some secretions {poss. because it was early in the morning)and everything looked okay. They sent his lung fuild for a culture. We came back home and Christopher was still whezzing and breathing bad, but we were sure it was nothing to worry about. Then the doctor calls with his culutre result..... He grew out pseudomonas and bordtella (sorry if these are spelled wrong). So they put him on bactrium and sched. him for the cf DNA test.. His regular doctor also decided to do the immunogloblin test--this turned out neg. Help me please.. from what I have read pseudomonas is found in cf kids and people who are sick (immune problems)??? and the same goes for the bordetella. Has anyone dealt with this?
thanks for listening...
 
M

momofchris

New member
After being told my sons sweat test result was 50 (by a nurse) we are told she read the amount not the result. The real result was 10. So we got happy real quick. We had a bronc sched. already in Knoxville so we took him for this and the doctor said he had some secretions {poss. because it was early in the morning)and everything looked okay. They sent his lung fuild for a culture. We came back home and Christopher was still whezzing and breathing bad, but we were sure it was nothing to worry about. Then the doctor calls with his culutre result..... He grew out pseudomonas and bordtella (sorry if these are spelled wrong). So they put him on bactrium and sched. him for the cf DNA test.. His regular doctor also decided to do the immunogloblin test--this turned out neg. Help me please.. from what I have read pseudomonas is found in cf kids and people who are sick (immune problems)??? and the same goes for the bordetella. Has anyone dealt with this?
thanks for listening...
 
M

momofchris

New member
After being told my sons sweat test result was 50 (by a nurse) we are told she read the amount not the result. The real result was 10. So we got happy real quick. We had a bronc sched. already in Knoxville so we took him for this and the doctor said he had some secretions {poss. because it was early in the morning)and everything looked okay. They sent his lung fuild for a culture. We came back home and Christopher was still whezzing and breathing bad, but we were sure it was nothing to worry about. Then the doctor calls with his culutre result..... He grew out pseudomonas and bordtella (sorry if these are spelled wrong). So they put him on bactrium and sched. him for the cf DNA test.. His regular doctor also decided to do the immunogloblin test--this turned out neg. Help me please.. from what I have read pseudomonas is found in cf kids and people who are sick (immune problems)??? and the same goes for the bordetella. Has anyone dealt with this?
thanks for listening...
 
M

momofchris

New member
After being told my sons sweat test result was 50 (by a nurse) we are told she read the amount not the result. The real result was 10. So we got happy real quick. We had a bronc sched. already in Knoxville so we took him for this and the doctor said he had some secretions {poss. because it was early in the morning)and everything looked okay. They sent his lung fuild for a culture. We came back home and Christopher was still whezzing and breathing bad, but we were sure it was nothing to worry about. Then the doctor calls with his culutre result..... He grew out pseudomonas and bordtella (sorry if these are spelled wrong). So they put him on bactrium and sched. him for the cf DNA test.. His regular doctor also decided to do the immunogloblin test--this turned out neg. Help me please.. from what I have read pseudomonas is found in cf kids and people who are sick (immune problems)??? and the same goes for the bordetella. Has anyone dealt with this?
<br />thanks for listening...
 
A

Alyssa

New member
Hang in there -- I'm sure it's tough not knowing what to think!

Do you know how many genes they are going to test for? If it is not a full test (1,561) you may still be left with more questions than answers... often times they like to start with only a screening of 97 genes or less... this leaves out soooooo many possibilities, that if it comes up negative, you really never know for sure.

If the immune testing is normal, and he has respiratory problems, with pseudomonas... I would think that is leaning towards CF.... if the doctor has ordered the DNA test and put him on bactrim, that's a good start.

I know it is awful to think about getting the CF diagnosis, but there is usually the upside of knowing what you are dealing with and being able to treat it.... often times once you know to start utilizing the preventative care and treatments, the patient starts doing and feeling better.
 
A

Alyssa

New member
Hang in there -- I'm sure it's tough not knowing what to think!

Do you know how many genes they are going to test for? If it is not a full test (1,561) you may still be left with more questions than answers... often times they like to start with only a screening of 97 genes or less... this leaves out soooooo many possibilities, that if it comes up negative, you really never know for sure.

If the immune testing is normal, and he has respiratory problems, with pseudomonas... I would think that is leaning towards CF.... if the doctor has ordered the DNA test and put him on bactrim, that's a good start.

I know it is awful to think about getting the CF diagnosis, but there is usually the upside of knowing what you are dealing with and being able to treat it.... often times once you know to start utilizing the preventative care and treatments, the patient starts doing and feeling better.
 
A

Alyssa

New member
Hang in there -- I'm sure it's tough not knowing what to think!

Do you know how many genes they are going to test for? If it is not a full test (1,561) you may still be left with more questions than answers... often times they like to start with only a screening of 97 genes or less... this leaves out soooooo many possibilities, that if it comes up negative, you really never know for sure.

If the immune testing is normal, and he has respiratory problems, with pseudomonas... I would think that is leaning towards CF.... if the doctor has ordered the DNA test and put him on bactrim, that's a good start.

I know it is awful to think about getting the CF diagnosis, but there is usually the upside of knowing what you are dealing with and being able to treat it.... often times once you know to start utilizing the preventative care and treatments, the patient starts doing and feeling better.
 
A

Alyssa

New member
Hang in there -- I'm sure it's tough not knowing what to think!

Do you know how many genes they are going to test for? If it is not a full test (1,561) you may still be left with more questions than answers... often times they like to start with only a screening of 97 genes or less... this leaves out soooooo many possibilities, that if it comes up negative, you really never know for sure.

If the immune testing is normal, and he has respiratory problems, with pseudomonas... I would think that is leaning towards CF.... if the doctor has ordered the DNA test and put him on bactrim, that's a good start.

I know it is awful to think about getting the CF diagnosis, but there is usually the upside of knowing what you are dealing with and being able to treat it.... often times once you know to start utilizing the preventative care and treatments, the patient starts doing and feeling better.
 
A

Alyssa

New member
Hang in there -- I'm sure it's tough not knowing what to think!
<br />
<br />Do you know how many genes they are going to test for? If it is not a full test (1,561) you may still be left with more questions than answers... often times they like to start with only a screening of 97 genes or less... this leaves out soooooo many possibilities, that if it comes up negative, you really never know for sure.
<br />
<br />If the immune testing is normal, and he has respiratory problems, with pseudomonas... I would think that is leaning towards CF.... if the doctor has ordered the DNA test and put him on bactrim, that's a good start.
<br />
<br />I know it is awful to think about getting the CF diagnosis, but there is usually the upside of knowing what you are dealing with and being able to treat it.... often times once you know to start utilizing the preventative care and treatments, the patient starts doing and feeling better.
 
M

Mommafirst

Guest
I have not dealt with this, but I am sure it was be incredibly frustrating to be going back and forth this way. Growing out pseudomonas in his culture seems like a pretty good reason to test as far and wide as you can for CF. I hope you get some answers and that your son will do much better with proper treatment. I'm kinda surprised they aren't starting him on TOBI, as this is the protocol with a positive pseudomonas culture as far as I know.
 
M

Mommafirst

Guest
I have not dealt with this, but I am sure it was be incredibly frustrating to be going back and forth this way. Growing out pseudomonas in his culture seems like a pretty good reason to test as far and wide as you can for CF. I hope you get some answers and that your son will do much better with proper treatment. I'm kinda surprised they aren't starting him on TOBI, as this is the protocol with a positive pseudomonas culture as far as I know.
 
M

Mommafirst

Guest
I have not dealt with this, but I am sure it was be incredibly frustrating to be going back and forth this way. Growing out pseudomonas in his culture seems like a pretty good reason to test as far and wide as you can for CF. I hope you get some answers and that your son will do much better with proper treatment. I'm kinda surprised they aren't starting him on TOBI, as this is the protocol with a positive pseudomonas culture as far as I know.
 
M

Mommafirst

Guest
I have not dealt with this, but I am sure it was be incredibly frustrating to be going back and forth this way. Growing out pseudomonas in his culture seems like a pretty good reason to test as far and wide as you can for CF. I hope you get some answers and that your son will do much better with proper treatment. I'm kinda surprised they aren't starting him on TOBI, as this is the protocol with a positive pseudomonas culture as far as I know.
 
M

Mommafirst

Guest
I have not dealt with this, but I am sure it was be incredibly frustrating to be going back and forth this way. Growing out pseudomonas in his culture seems like a pretty good reason to test as far and wide as you can for CF. I hope you get some answers and that your son will do much better with proper treatment. I'm kinda surprised they aren't starting him on TOBI, as this is the protocol with a positive pseudomonas culture as far as I know.
 
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