suspicion of cf

hockeymomnc

New member
I have been reading this cite for a couple of months and want to get some input on something.

I have two children-6y/o and 19 mo. my 6y/o was diagnosed with reactive airway disease at age 3 months after a 1-2 month bout with bronchitis/croup. he has been on flovent and albuterol since then. he has chronic sinusitis and nothing works(he is on nasonex and claritin), but we tried everything over the counter and including zyrtec and singulair with no avail. he has "flares" every few months, more in winter, where he coughs constantly and the albuterol does not relieve it, and it always results in "throwing up" phlegm along with whatever he ate. He is i believe 25-50 % for height and weight, but eats like a grown man.

my 19m/o is also small and eats like an adult, and her stools are always very mushy and it looks like chunks in it. her daycare reports diahrea EVERY day, usually 2-4 on average per day. she also has chronic sinusitis and coughs when asleep every night. i asked her peds for a sweat test for both, only because of the ongoing diahrea and the lung issues with her brother. He does not think it is CF. i know it sounds wierd, and maybe i am a hypochondriac, but something feels wrong. i asked for a sweat test for her brother when he was an infant and was throwing up the phlegm and his ped at the time also said it is not CF.

i have been seeing comments from people diagnosed later in life, not always as an infant, as the mutations can determine severity of symptoms. i also know of a teenager who had such a mild case of CF he rarely went to the doctor let alone had symptoms that were evident.

what do you all think? am I paranoid? i hope so, because i don't want to become a regular on this site, it breaks my heart. any advice would be great and appreciated.
 

hockeymomnc

New member
I have been reading this cite for a couple of months and want to get some input on something.

I have two children-6y/o and 19 mo. my 6y/o was diagnosed with reactive airway disease at age 3 months after a 1-2 month bout with bronchitis/croup. he has been on flovent and albuterol since then. he has chronic sinusitis and nothing works(he is on nasonex and claritin), but we tried everything over the counter and including zyrtec and singulair with no avail. he has "flares" every few months, more in winter, where he coughs constantly and the albuterol does not relieve it, and it always results in "throwing up" phlegm along with whatever he ate. He is i believe 25-50 % for height and weight, but eats like a grown man.

my 19m/o is also small and eats like an adult, and her stools are always very mushy and it looks like chunks in it. her daycare reports diahrea EVERY day, usually 2-4 on average per day. she also has chronic sinusitis and coughs when asleep every night. i asked her peds for a sweat test for both, only because of the ongoing diahrea and the lung issues with her brother. He does not think it is CF. i know it sounds wierd, and maybe i am a hypochondriac, but something feels wrong. i asked for a sweat test for her brother when he was an infant and was throwing up the phlegm and his ped at the time also said it is not CF.

i have been seeing comments from people diagnosed later in life, not always as an infant, as the mutations can determine severity of symptoms. i also know of a teenager who had such a mild case of CF he rarely went to the doctor let alone had symptoms that were evident.

what do you all think? am I paranoid? i hope so, because i don't want to become a regular on this site, it breaks my heart. any advice would be great and appreciated.
 

hockeymomnc

New member
I have been reading this cite for a couple of months and want to get some input on something.

I have two children-6y/o and 19 mo. my 6y/o was diagnosed with reactive airway disease at age 3 months after a 1-2 month bout with bronchitis/croup. he has been on flovent and albuterol since then. he has chronic sinusitis and nothing works(he is on nasonex and claritin), but we tried everything over the counter and including zyrtec and singulair with no avail. he has "flares" every few months, more in winter, where he coughs constantly and the albuterol does not relieve it, and it always results in "throwing up" phlegm along with whatever he ate. He is i believe 25-50 % for height and weight, but eats like a grown man.

my 19m/o is also small and eats like an adult, and her stools are always very mushy and it looks like chunks in it. her daycare reports diahrea EVERY day, usually 2-4 on average per day. she also has chronic sinusitis and coughs when asleep every night. i asked her peds for a sweat test for both, only because of the ongoing diahrea and the lung issues with her brother. He does not think it is CF. i know it sounds wierd, and maybe i am a hypochondriac, but something feels wrong. i asked for a sweat test for her brother when he was an infant and was throwing up the phlegm and his ped at the time also said it is not CF.

i have been seeing comments from people diagnosed later in life, not always as an infant, as the mutations can determine severity of symptoms. i also know of a teenager who had such a mild case of CF he rarely went to the doctor let alone had symptoms that were evident.

what do you all think? am I paranoid? i hope so, because i don't want to become a regular on this site, it breaks my heart. any advice would be great and appreciated.
 

Alyssa

New member
Any doctor who doesn't think your kids need to be tested for CF is NOT someone you should be seeing.

Get to a CFF clinic and get your kids tested -- those are very classic CF symptoms -- your children will benefit greatly by getting the correct treatment. I hope you don't become a regular on this site either... but from what you are describing, those kids need to be tested and treated ASAP. You would be amazed how many general practice & pediatric doctors out there just are not familiar enough with CF.

Best of luck, please check back in with us and keep us posted.
 

Alyssa

New member
Any doctor who doesn't think your kids need to be tested for CF is NOT someone you should be seeing.

Get to a CFF clinic and get your kids tested -- those are very classic CF symptoms -- your children will benefit greatly by getting the correct treatment. I hope you don't become a regular on this site either... but from what you are describing, those kids need to be tested and treated ASAP. You would be amazed how many general practice & pediatric doctors out there just are not familiar enough with CF.

Best of luck, please check back in with us and keep us posted.
 

Alyssa

New member
Any doctor who doesn't think your kids need to be tested for CF is NOT someone you should be seeing.

Get to a CFF clinic and get your kids tested -- those are very classic CF symptoms -- your children will benefit greatly by getting the correct treatment. I hope you don't become a regular on this site either... but from what you are describing, those kids need to be tested and treated ASAP. You would be amazed how many general practice & pediatric doctors out there just are not familiar enough with CF.

Best of luck, please check back in with us and keep us posted.
 

ktsmom

New member
You don't want to become a regular? But we're such a fun group! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Okay, seriously, I would push for testing like Alyssa describes (CFF accredited center, etc.) At this point what would be the harm of ruling CF out? I would also strongly reinforce what Alyssa said about many front line docs not being familiar with CF.

So obviously I had nothing at all new to add but I wanted to let you know we are listening! I hope you get the answers you and your kids need.
 

ktsmom

New member
You don't want to become a regular? But we're such a fun group! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Okay, seriously, I would push for testing like Alyssa describes (CFF accredited center, etc.) At this point what would be the harm of ruling CF out? I would also strongly reinforce what Alyssa said about many front line docs not being familiar with CF.

So obviously I had nothing at all new to add but I wanted to let you know we are listening! I hope you get the answers you and your kids need.
 

ktsmom

New member
You don't want to become a regular? But we're such a fun group! <img src="i/expressions/face-icon-small-wink.gif" border="0">

Okay, seriously, I would push for testing like Alyssa describes (CFF accredited center, etc.) At this point what would be the harm of ruling CF out? I would also strongly reinforce what Alyssa said about many front line docs not being familiar with CF.

So obviously I had nothing at all new to add but I wanted to let you know we are listening! I hope you get the answers you and your kids need.
 

dyza

New member
Agree, a lot of doctors only know what is written in a book, push for testing. When I go to my own GP I go on Tuesday mornings as that is when she has student doctors in from the universities, the doctor will ask me to give them a rundown on CF and how it affects my son. Educate them when they are young, everylittle helps, sorry I went off on a tangent.
Craig

Edited to add : GP is general practitioner, is it the same in the USA?
 

dyza

New member
Agree, a lot of doctors only know what is written in a book, push for testing. When I go to my own GP I go on Tuesday mornings as that is when she has student doctors in from the universities, the doctor will ask me to give them a rundown on CF and how it affects my son. Educate them when they are young, everylittle helps, sorry I went off on a tangent.
Craig

Edited to add : GP is general practitioner, is it the same in the USA?
 

dyza

New member
Agree, a lot of doctors only know what is written in a book, push for testing. When I go to my own GP I go on Tuesday mornings as that is when she has student doctors in from the universities, the doctor will ask me to give them a rundown on CF and how it affects my son. Educate them when they are young, everylittle helps, sorry I went off on a tangent.
Craig

Edited to add : GP is general practitioner, is it the same in the USA?
 

JazzysMom

New member
Ditto on everyone elses response. If nothing else maybe you can at least rule it out. It would suck to find out way down the line that you were right & the kids could have been treated all along! Good LUck and let us know what happens!
 

JazzysMom

New member
Ditto on everyone elses response. If nothing else maybe you can at least rule it out. It would suck to find out way down the line that you were right & the kids could have been treated all along! Good LUck and let us know what happens!
 

JazzysMom

New member
Ditto on everyone elses response. If nothing else maybe you can at least rule it out. It would suck to find out way down the line that you were right & the kids could have been treated all along! Good LUck and let us know what happens!
 
2

2perfectboys

Guest
Yes, push for testing, if they refuse, have them put this and writing so u can gie it to your lawyer and go to a new doctor.....it prob is not CF, but rule it out.....I can't believe they would diagnosis someone with Reactive airway disease and not first look at CF...WOW...dumb people are doctors....keep us posted
 
2

2perfectboys

Guest
Yes, push for testing, if they refuse, have them put this and writing so u can gie it to your lawyer and go to a new doctor.....it prob is not CF, but rule it out.....I can't believe they would diagnosis someone with Reactive airway disease and not first look at CF...WOW...dumb people are doctors....keep us posted
 
2

2perfectboys

Guest
Yes, push for testing, if they refuse, have them put this and writing so u can gie it to your lawyer and go to a new doctor.....it prob is not CF, but rule it out.....I can't believe they would diagnosis someone with Reactive airway disease and not first look at CF...WOW...dumb people are doctors....keep us posted
 

CFHockeyMom

New member
You can find hundreds of stories just like yours on here. Our ped didn't believe it could be CF either. She was wrong.

Tell your ped to order the sweat test for both your kids or you'll find a Dr. that will. Unfortunately, you sometimes have to "get in their face" before they'll do anything. After all, they couldn't possibly be wrong, could they?...sarcasm

I too hope you won't be a regular here but until you at least get a sweat test, you'll always be wondering. Trust your gut. So many mom's and dad's on here just knew something was wrong and had to really push their docs to do the right thing.
 

CFHockeyMom

New member
You can find hundreds of stories just like yours on here. Our ped didn't believe it could be CF either. She was wrong.

Tell your ped to order the sweat test for both your kids or you'll find a Dr. that will. Unfortunately, you sometimes have to "get in their face" before they'll do anything. After all, they couldn't possibly be wrong, could they?...sarcasm

I too hope you won't be a regular here but until you at least get a sweat test, you'll always be wondering. Trust your gut. So many mom's and dad's on here just knew something was wrong and had to really push their docs to do the right thing.
 
Top