Cystic Fibrosis Center Visis

Z

ziggygirlkcz

New member
Well my son had his visit to the cystic fibrosis care center today for further testing. I have to say I was not at all impressed. The lab they sent us to for the sweat test did not seem to know what they were doing. I even heard a lady ask the other "what do we need to do a sweat test?" After waiting forever....we finally got in to see the doctor. He was extremely rude and would not let me speak....not even to answer his questions. He asked me if my son had genetic testing done yet........ummmmm hello....if he had genetic testing done already wouldn't I know for a fact whether or not he was positive for CF!!! The he told me that there was no need for it because there were no CF patients that had sweat test results of 47 and 28!! He says all of his issues must be from asthma! I have never heard of a child staying sick for a month straight on antibiotics with stuff coming out of his nose, eyes, and ears because of asthma. Anybody have any advice??
 
Z

ziggygirlkcz

New member
Well my son had his visit to the cystic fibrosis care center today for further testing. I have to say I was not at all impressed. The lab they sent us to for the sweat test did not seem to know what they were doing. I even heard a lady ask the other "what do we need to do a sweat test?" After waiting forever....we finally got in to see the doctor. He was extremely rude and would not let me speak....not even to answer his questions. He asked me if my son had genetic testing done yet........ummmmm hello....if he had genetic testing done already wouldn't I know for a fact whether or not he was positive for CF!!! The he told me that there was no need for it because there were no CF patients that had sweat test results of 47 and 28!! He says all of his issues must be from asthma! I have never heard of a child staying sick for a month straight on antibiotics with stuff coming out of his nose, eyes, and ears because of asthma. Anybody have any advice??
 
Z

ziggygirlkcz

New member
Well my son had his visit to the cystic fibrosis care center today for further testing. I have to say I was not at all impressed. The lab they sent us to for the sweat test did not seem to know what they were doing. I even heard a lady ask the other "what do we need to do a sweat test?" After waiting forever....we finally got in to see the doctor. He was extremely rude and would not let me speak....not even to answer his questions. He asked me if my son had genetic testing done yet........ummmmm hello....if he had genetic testing done already wouldn't I know for a fact whether or not he was positive for CF!!! The he told me that there was no need for it because there were no CF patients that had sweat test results of 47 and 28!! He says all of his issues must be from asthma! I have never heard of a child staying sick for a month straight on antibiotics with stuff coming out of his nose, eyes, and ears because of asthma. Anybody have any advice??
 
Z

ziggygirlkcz

New member
Well my son had his visit to the cystic fibrosis care center today for further testing. I have to say I was not at all impressed. The lab they sent us to for the sweat test did not seem to know what they were doing. I even heard a lady ask the other "what do we need to do a sweat test?" After waiting forever....we finally got in to see the doctor. He was extremely rude and would not let me speak....not even to answer his questions. He asked me if my son had genetic testing done yet........ummmmm hello....if he had genetic testing done already wouldn't I know for a fact whether or not he was positive for CF!!! The he told me that there was no need for it because there were no CF patients that had sweat test results of 47 and 28!! He says all of his issues must be from asthma! I have never heard of a child staying sick for a month straight on antibiotics with stuff coming out of his nose, eyes, and ears because of asthma. Anybody have any advice??
 
Z

ziggygirlkcz

New member
Well my son had his visit to the cystic fibrosis care center today for further testing. I have to say I was not at all impressed. The lab they sent us to for the sweat test did not seem to know what they were doing. I even heard a lady ask the other "what do we need to do a sweat test?" After waiting forever....we finally got in to see the doctor. He was extremely rude and would not let me speak....not even to answer his questions. He asked me if my son had genetic testing done yet........ummmmm hello....if he had genetic testing done already wouldn't I know for a fact whether or not he was positive for CF!!! The he told me that there was no need for it because there were no CF patients that had sweat test results of 47 and 28!! He says all of his issues must be from asthma! I have never heard of a child staying sick for a month straight on antibiotics with stuff coming out of his nose, eyes, and ears because of asthma. Anybody have any advice??
 
M

Mommafirst

Guest
Find a different CF doctor. Kick, scream and make a big old stink. Call the center and ask to speak to the CF nurse or the director. Contact the CFF to see if they are considered a legitimately accredited center. Don't let this lie. My daughter had a sweat test of 53 and 45 and HAS CF. There are plenty around here with MUCH lower numbers. He doesn't know what he's tlaking about -- I'm sooooo sorry you have to fight this ridiculous battle, but you are NOT being unreasonable.
 
M

Mommafirst

Guest
Find a different CF doctor. Kick, scream and make a big old stink. Call the center and ask to speak to the CF nurse or the director. Contact the CFF to see if they are considered a legitimately accredited center. Don't let this lie. My daughter had a sweat test of 53 and 45 and HAS CF. There are plenty around here with MUCH lower numbers. He doesn't know what he's tlaking about -- I'm sooooo sorry you have to fight this ridiculous battle, but you are NOT being unreasonable.
 
M

Mommafirst

Guest
Find a different CF doctor. Kick, scream and make a big old stink. Call the center and ask to speak to the CF nurse or the director. Contact the CFF to see if they are considered a legitimately accredited center. Don't let this lie. My daughter had a sweat test of 53 and 45 and HAS CF. There are plenty around here with MUCH lower numbers. He doesn't know what he's tlaking about -- I'm sooooo sorry you have to fight this ridiculous battle, but you are NOT being unreasonable.
 
M

Mommafirst

Guest
Find a different CF doctor. Kick, scream and make a big old stink. Call the center and ask to speak to the CF nurse or the director. Contact the CFF to see if they are considered a legitimately accredited center. Don't let this lie. My daughter had a sweat test of 53 and 45 and HAS CF. There are plenty around here with MUCH lower numbers. He doesn't know what he's tlaking about -- I'm sooooo sorry you have to fight this ridiculous battle, but you are NOT being unreasonable.
 
M

Mommafirst

Guest
Find a different CF doctor. Kick, scream and make a big old stink. Call the center and ask to speak to the CF nurse or the director. Contact the CFF to see if they are considered a legitimately accredited center. Don't let this lie. My daughter had a sweat test of 53 and 45 and HAS CF. There are plenty around here with MUCH lower numbers. He doesn't know what he's tlaking about -- I'm sooooo sorry you have to fight this ridiculous battle, but you are NOT being unreasonable.
 
Z

ziggygirlkcz

New member
Sadly enough this was the director of the clinic that was listed on the CFF website!! When I questioned him on the sweat test results........he said there were no CF patients with that low sweat test results so he was sure he didn't have it.
 
Z

ziggygirlkcz

New member
Sadly enough this was the director of the clinic that was listed on the CFF website!! When I questioned him on the sweat test results........he said there were no CF patients with that low sweat test results so he was sure he didn't have it.
 
Z

ziggygirlkcz

New member
Sadly enough this was the director of the clinic that was listed on the CFF website!! When I questioned him on the sweat test results........he said there were no CF patients with that low sweat test results so he was sure he didn't have it.
 
Z

ziggygirlkcz

New member
Sadly enough this was the director of the clinic that was listed on the CFF website!! When I questioned him on the sweat test results........he said there were no CF patients with that low sweat test results so he was sure he didn't have it.
 
Z

ziggygirlkcz

New member
Sadly enough this was the director of the clinic that was listed on the CFF website!! When I questioned him on the sweat test results........he said there were no CF patients with that low sweat test results so he was sure he didn't have it.
 
R

Ratatosk

Administrator
Staff member
Unfortunately and accreditted cf clinic doesn't always guarantee quality health care. Sounds like our local cf clinic which we don't go to anymore. The pulmonologist wouldn't let me talk, interrupted, used scare tactics and criticised everything we did. DS had a normal 32 for his sweat test.

With all the mucus, I guess I'd DEMAND a CF culture be done to determine what kind of bugs he's growing, as well as ask for genetic blood testing -- if they refuse ask them to put it in writing why they don't feel it's necessary. I agree, you need to find another clinic. It's horrible that in addition to the treatment you received you also end up being charged/paying money for that abuse. That's what always flabbergasted me at our local clinic. I'd shake my head and say to DH "we PAID for this abuse?"
 
R

Ratatosk

Administrator
Staff member
Unfortunately and accreditted cf clinic doesn't always guarantee quality health care. Sounds like our local cf clinic which we don't go to anymore. The pulmonologist wouldn't let me talk, interrupted, used scare tactics and criticised everything we did. DS had a normal 32 for his sweat test.

With all the mucus, I guess I'd DEMAND a CF culture be done to determine what kind of bugs he's growing, as well as ask for genetic blood testing -- if they refuse ask them to put it in writing why they don't feel it's necessary. I agree, you need to find another clinic. It's horrible that in addition to the treatment you received you also end up being charged/paying money for that abuse. That's what always flabbergasted me at our local clinic. I'd shake my head and say to DH "we PAID for this abuse?"
 
R

Ratatosk

Administrator
Staff member
Unfortunately and accreditted cf clinic doesn't always guarantee quality health care. Sounds like our local cf clinic which we don't go to anymore. The pulmonologist wouldn't let me talk, interrupted, used scare tactics and criticised everything we did. DS had a normal 32 for his sweat test.

With all the mucus, I guess I'd DEMAND a CF culture be done to determine what kind of bugs he's growing, as well as ask for genetic blood testing -- if they refuse ask them to put it in writing why they don't feel it's necessary. I agree, you need to find another clinic. It's horrible that in addition to the treatment you received you also end up being charged/paying money for that abuse. That's what always flabbergasted me at our local clinic. I'd shake my head and say to DH "we PAID for this abuse?"
 
R

Ratatosk

Administrator
Staff member
Unfortunately and accreditted cf clinic doesn't always guarantee quality health care. Sounds like our local cf clinic which we don't go to anymore. The pulmonologist wouldn't let me talk, interrupted, used scare tactics and criticised everything we did. DS had a normal 32 for his sweat test.

With all the mucus, I guess I'd DEMAND a CF culture be done to determine what kind of bugs he's growing, as well as ask for genetic blood testing -- if they refuse ask them to put it in writing why they don't feel it's necessary. I agree, you need to find another clinic. It's horrible that in addition to the treatment you received you also end up being charged/paying money for that abuse. That's what always flabbergasted me at our local clinic. I'd shake my head and say to DH "we PAID for this abuse?"
 
R

Ratatosk

Administrator
Staff member
Unfortunately and accreditted cf clinic doesn't always guarantee quality health care. Sounds like our local cf clinic which we don't go to anymore. The pulmonologist wouldn't let me talk, interrupted, used scare tactics and criticised everything we did. DS had a normal 32 for his sweat test.
<br />
<br />With all the mucus, I guess I'd DEMAND a CF culture be done to determine what kind of bugs he's growing, as well as ask for genetic blood testing -- if they refuse ask them to put it in writing why they don't feel it's necessary. I agree, you need to find another clinic. It's horrible that in addition to the treatment you received you also end up being charged/paying money for that abuse. That's what always flabbergasted me at our local clinic. I'd shake my head and say to DH "we PAID for this abuse?"
 
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