13 year old Boy-can some one help me?

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Mommafirst

Guest
So sorry to hear you are still in limbo. So unfair. I guess if I were you I'd want to have them do a culture. I mean if he's culturing CF bugs, that would seem to be a way to show he's more than just a carrier. And if he's not, well, who knows. But I'd think at his age he'd at least be culturing Staph. JMO, I'm still relatively new to this world to -- maybe someone else would have an idea.
 
M

Mommafirst

Guest
So sorry to hear you are still in limbo. So unfair. I guess if I were you I'd want to have them do a culture. I mean if he's culturing CF bugs, that would seem to be a way to show he's more than just a carrier. And if he's not, well, who knows. But I'd think at his age he'd at least be culturing Staph. JMO, I'm still relatively new to this world to -- maybe someone else would have an idea.
 
M

Mommafirst

Guest
So sorry to hear you are still in limbo. So unfair. I guess if I were you I'd want to have them do a culture. I mean if he's culturing CF bugs, that would seem to be a way to show he's more than just a carrier. And if he's not, well, who knows. But I'd think at his age he'd at least be culturing Staph. JMO, I'm still relatively new to this world to -- maybe someone else would have an idea.
 
O

okok

New member
It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.

I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!
 
O

okok

New member
It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.

I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!
 
O

okok

New member
It sounds like you still feel unsure about whether or not your son has CF so i would ask your doctor to do some lab tests that might help rule out CF. Also while this does not allow you to rule out CF it might help ease your mind, between 50-75% of people with CF have a chloride/sodium ratio that is greater than 1. The lab or your docs should have this info from your son's sweat tests. A chloride/sodium ratio of greater than 1 is suggestive of CF since i think only 10% of people without CF have this. I'm not sure about carriers though... it is possible carriers could have slightly elevated ratio since they tend to have a slighty elevated sweat chloride.

I agree that throat cultures could be informative if he cultures one of the CF bugs. Your docs will know more than me. good luck!
 
A

Alyssa

New member
I think he should still be treated and followed as if he has CF, because it's still entirely possible he does have a second gene, but it hasn't been identified yet. It wasn't all that long ago when they could only test for 400 genes, now they test for 1500. It is not unheard of to be told you are a carrier only then a few years later test again and find the second gene.

Having said that... I'm sure it is entirely possible he really is only a carrier, with some sinus problems, but why not err on the side of caution for a few years, get the best treatment possible and see what happens.
 
A

Alyssa

New member
I think he should still be treated and followed as if he has CF, because it's still entirely possible he does have a second gene, but it hasn't been identified yet. It wasn't all that long ago when they could only test for 400 genes, now they test for 1500. It is not unheard of to be told you are a carrier only then a few years later test again and find the second gene.

Having said that... I'm sure it is entirely possible he really is only a carrier, with some sinus problems, but why not err on the side of caution for a few years, get the best treatment possible and see what happens.
 
A

Alyssa

New member
I think he should still be treated and followed as if he has CF, because it's still entirely possible he does have a second gene, but it hasn't been identified yet. It wasn't all that long ago when they could only test for 400 genes, now they test for 1500. It is not unheard of to be told you are a carrier only then a few years later test again and find the second gene.

Having said that... I'm sure it is entirely possible he really is only a carrier, with some sinus problems, but why not err on the side of caution for a few years, get the best treatment possible and see what happens.
 
C

Childressj

New member
The CF Doc just called me and and said that he wanted to run more Test on Trevor because he had many of the "classic CF symtoms" so they are scheduling that right now and he told me "together we will get to the bottom of this" I feel like all these doctors are finally listening to me......If it is not CF , then I am confident that this doctor will help us to find an answer. they just called while typing the appt. is on Friday at 10:30am (of course the day we areleaving to go camping) <img src="i/expressions/face-icon-small-smile.gif" border="0"> JC
 
C

Childressj

New member
The CF Doc just called me and and said that he wanted to run more Test on Trevor because he had many of the "classic CF symtoms" so they are scheduling that right now and he told me "together we will get to the bottom of this" I feel like all these doctors are finally listening to me......If it is not CF , then I am confident that this doctor will help us to find an answer. they just called while typing the appt. is on Friday at 10:30am (of course the day we areleaving to go camping) <img src="i/expressions/face-icon-small-smile.gif" border="0"> JC
 
C

Childressj

New member
The CF Doc just called me and and said that he wanted to run more Test on Trevor because he had many of the "classic CF symtoms" so they are scheduling that right now and he told me "together we will get to the bottom of this" I feel like all these doctors are finally listening to me......If it is not CF , then I am confident that this doctor will help us to find an answer. they just called while typing the appt. is on Friday at 10:30am (of course the day we areleaving to go camping) <img src="i/expressions/face-icon-small-smile.gif" border="0"> JC
 
O

okok

New member
oh, that is so great to hear. It is such a relief to finally hear about a doctor who isn't simply dismissing someone's symptoms based on negative genetic testing (or only detecting you son as a carrier) and a borderline sweat test! It sounds like you've found the right doctor! I'm sure the additional testing will help you get some answers and help your son get the treatment he needs.
 
O

okok

New member
oh, that is so great to hear. It is such a relief to finally hear about a doctor who isn't simply dismissing someone's symptoms based on negative genetic testing (or only detecting you son as a carrier) and a borderline sweat test! It sounds like you've found the right doctor! I'm sure the additional testing will help you get some answers and help your son get the treatment he needs.
 
O

okok

New member
oh, that is so great to hear. It is such a relief to finally hear about a doctor who isn't simply dismissing someone's symptoms based on negative genetic testing (or only detecting you son as a carrier) and a borderline sweat test! It sounds like you've found the right doctor! I'm sure the additional testing will help you get some answers and help your son get the treatment he needs.
 
C

Childressj

New member
no, the nurse did not say what tests they were going to do, I mentioned to her some of the tests that I have heard you guys speak about(cultures, nasal swabs, ct scans) and she said "yeah, he will probably do those"....I am going to get Trevor's entire chart copied front to back and make many notes on meds, diagnosis, and symtoms since birth. I hope that this will give the Doc an accurate history of Trevor. Trevor is actually feeling pretty good right now, so I sure hope this doctor doesn't dismiss him as healthy and not do anything. Trevor is on several meds and that combination seems to be keeping him going right now, I sure hope that I find out something on Friday. The appt. time is 10:30 am...I'll send an update on Monday. Thanks for responding, it helps that I know people are thinking about this with me. Jennifer
 
C

Childressj

New member
no, the nurse did not say what tests they were going to do, I mentioned to her some of the tests that I have heard you guys speak about(cultures, nasal swabs, ct scans) and she said "yeah, he will probably do those"....I am going to get Trevor's entire chart copied front to back and make many notes on meds, diagnosis, and symtoms since birth. I hope that this will give the Doc an accurate history of Trevor. Trevor is actually feeling pretty good right now, so I sure hope this doctor doesn't dismiss him as healthy and not do anything. Trevor is on several meds and that combination seems to be keeping him going right now, I sure hope that I find out something on Friday. The appt. time is 10:30 am...I'll send an update on Monday. Thanks for responding, it helps that I know people are thinking about this with me. Jennifer
 
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