Possible CF

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ellehcim87

New member
My son is 8yrs old. He had severe sleep apnea when he was young and had croup several times a year and made frequent trips to the ER for it. He had his tonsils and adnoids removed at age 3. 1.5 years ago he ended up with double ear infections, pneumonia, sinus infection and they diagnosed him with asthma. After that episode he got better but got all of those things 2 more times last year. He missed several days of school because his coughing was so hard to control. None of the inhalers worked for him. We then saw an ENT who did a cat scan and he said he had polyps and major build up of infection in his sinus. Antibiotic took care of it and then through the summer he was okay. Well, he still coughs all the time, especially with exercise. Not while he sleeps though. His adnoids have grown back. He is not under weight but under his normal height. The new Dr. is running a test for CF. I am freaking out because I dont know much about it and I cant imagine after 8 years they have missed something like this. His poop doesnt smell or look odd. Can anyone give me some advice or tell me if this may be cf? I have two weeks to wait for this test so Im kinda stressed out.
KIm
 
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ellehcim87

New member
My son is 8yrs old. He had severe sleep apnea when he was young and had croup several times a year and made frequent trips to the ER for it. He had his tonsils and adnoids removed at age 3. 1.5 years ago he ended up with double ear infections, pneumonia, sinus infection and they diagnosed him with asthma. After that episode he got better but got all of those things 2 more times last year. He missed several days of school because his coughing was so hard to control. None of the inhalers worked for him. We then saw an ENT who did a cat scan and he said he had polyps and major build up of infection in his sinus. Antibiotic took care of it and then through the summer he was okay. Well, he still coughs all the time, especially with exercise. Not while he sleeps though. His adnoids have grown back. He is not under weight but under his normal height. The new Dr. is running a test for CF. I am freaking out because I dont know much about it and I cant imagine after 8 years they have missed something like this. His poop doesnt smell or look odd. Can anyone give me some advice or tell me if this may be cf? I have two weeks to wait for this test so Im kinda stressed out.
KIm
 
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ellehcim87

New member
My son is 8yrs old. He had severe sleep apnea when he was young and had croup several times a year and made frequent trips to the ER for it. He had his tonsils and adnoids removed at age 3. 1.5 years ago he ended up with double ear infections, pneumonia, sinus infection and they diagnosed him with asthma. After that episode he got better but got all of those things 2 more times last year. He missed several days of school because his coughing was so hard to control. None of the inhalers worked for him. We then saw an ENT who did a cat scan and he said he had polyps and major build up of infection in his sinus. Antibiotic took care of it and then through the summer he was okay. Well, he still coughs all the time, especially with exercise. Not while he sleeps though. His adnoids have grown back. He is not under weight but under his normal height. The new Dr. is running a test for CF. I am freaking out because I dont know much about it and I cant imagine after 8 years they have missed something like this. His poop doesnt smell or look odd. Can anyone give me some advice or tell me if this may be cf? I have two weeks to wait for this test so Im kinda stressed out.
KIm
 
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folione

New member
Cf symptoms can be all over the map for different people with CF - and symptoms that sound like CF can be due to plenty of other things also. Unless you know you and the dad are CF carriers you might want to tell yourself that the Dr. is doing it because it's a relatively simple test to rule out a rare cause.

If what they did was a sweat test, there's no way it takes 2 weeks: that test gives results more or less right after it is done. If it is a genetic (blood) test it can take a couple weeks depending on the lab -but beware that the routine genetic test only looks for a relative handful of CF gene mutations and can end up being inconclusive.

If he does have CF he'll finally be able to get the appropriate medicines to address those symptoms - so getting to the bottom of it even if it is unpleasant news is going to be a relief; maybe even more so than getting back a negative CF test result since you've been through 8 years of health worries already.
 
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folione

New member
Cf symptoms can be all over the map for different people with CF - and symptoms that sound like CF can be due to plenty of other things also. Unless you know you and the dad are CF carriers you might want to tell yourself that the Dr. is doing it because it's a relatively simple test to rule out a rare cause.

If what they did was a sweat test, there's no way it takes 2 weeks: that test gives results more or less right after it is done. If it is a genetic (blood) test it can take a couple weeks depending on the lab -but beware that the routine genetic test only looks for a relative handful of CF gene mutations and can end up being inconclusive.

If he does have CF he'll finally be able to get the appropriate medicines to address those symptoms - so getting to the bottom of it even if it is unpleasant news is going to be a relief; maybe even more so than getting back a negative CF test result since you've been through 8 years of health worries already.
 
F

folione

New member
Cf symptoms can be all over the map for different people with CF - and symptoms that sound like CF can be due to plenty of other things also. Unless you know you and the dad are CF carriers you might want to tell yourself that the Dr. is doing it because it's a relatively simple test to rule out a rare cause.

If what they did was a sweat test, there's no way it takes 2 weeks: that test gives results more or less right after it is done. If it is a genetic (blood) test it can take a couple weeks depending on the lab -but beware that the routine genetic test only looks for a relative handful of CF gene mutations and can end up being inconclusive.

If he does have CF he'll finally be able to get the appropriate medicines to address those symptoms - so getting to the bottom of it even if it is unpleasant news is going to be a relief; maybe even more so than getting back a negative CF test result since you've been through 8 years of health worries already.
 
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tammykrumrey

Guest
Kim,
I agree with what was said above. And not everyone with CF has weight gain issues, so it is possible for someone to have other issues and not the weight issues.
I know it might be hard to take in right now, but it sounds like you have a good doctor who is trying to find out what underlying issues MAY be causing your son to have these other problems, such as the sinus problems. There are so many on this site who have had to fight doctors just to test their children for CF because they(the dr.s) are so uneducated regarding all the symptoms that are not so obvious.
I hope all works out well for you.
 
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tammykrumrey

Guest
Kim,
I agree with what was said above. And not everyone with CF has weight gain issues, so it is possible for someone to have other issues and not the weight issues.
I know it might be hard to take in right now, but it sounds like you have a good doctor who is trying to find out what underlying issues MAY be causing your son to have these other problems, such as the sinus problems. There are so many on this site who have had to fight doctors just to test their children for CF because they(the dr.s) are so uneducated regarding all the symptoms that are not so obvious.
I hope all works out well for you.
 
T

tammykrumrey

Guest
Kim,
I agree with what was said above. And not everyone with CF has weight gain issues, so it is possible for someone to have other issues and not the weight issues.
I know it might be hard to take in right now, but it sounds like you have a good doctor who is trying to find out what underlying issues MAY be causing your son to have these other problems, such as the sinus problems. There are so many on this site who have had to fight doctors just to test their children for CF because they(the dr.s) are so uneducated regarding all the symptoms that are not so obvious.
I hope all works out well for you.
 
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okok

New member
It is pretty standard for doctors to check for CF in cases where nasal polyps develop in childern. It is common for CFers to have nasal polyps but nasal polyps are generally uncommon in chidern so this is probably what prompted the CF testing. However as others said, this does not absolutely mean that your child has CF it just means that your doctor is being responsible by ruling out CF.

Good luck. I'll be hoping that your son's sweat test is negative. Let us know how it goes!
 
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okok

New member
It is pretty standard for doctors to check for CF in cases where nasal polyps develop in childern. It is common for CFers to have nasal polyps but nasal polyps are generally uncommon in chidern so this is probably what prompted the CF testing. However as others said, this does not absolutely mean that your child has CF it just means that your doctor is being responsible by ruling out CF.

Good luck. I'll be hoping that your son's sweat test is negative. Let us know how it goes!
 
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okok

New member
It is pretty standard for doctors to check for CF in cases where nasal polyps develop in childern. It is common for CFers to have nasal polyps but nasal polyps are generally uncommon in chidern so this is probably what prompted the CF testing. However as others said, this does not absolutely mean that your child has CF it just means that your doctor is being responsible by ruling out CF.

Good luck. I'll be hoping that your son's sweat test is negative. Let us know how it goes!
 
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