Waiting for Answers-- VERY FRUSTRATED

[JoyfulHeart]

Does this sound like CF in a 5 year old boy?

1st 2 years of life, had 24 episodes of croup/asthma
11 hospitalizations of pneumonia. Almost died. Lung collapse. ICU.
"uncontrollable" asthma (docs just keep medicating aargh!)
Constipation on and off his whole life
Low LOW immune system
Sinus infections (that dont respond to antibiotics)
Catscan showed Sinus blockage that appears to be pollups (ENT was alarmed)
Always "hot natured"-- kid could sweat in a snowstorm

Adnoids and tonsils removed at age 2 because of recurring problems.

He's got good weight -- 50th percentile at this pediatrician appt last week, but when he's sick he goes on eating strike and refuses all food/drinks until well again. (drives me nuts!!)

His pumlonologist, immunologist and pediatrician are concerned. They said he shows MANY symptoms of possible CF, or a strain of CF.

We go wednesday for the Sweat test and doing the genetic test same time. Thursday is bronchial scope and possible MRI (if insurance will cooperate)

<b>
UPDATE BELOW>>>>>>>></b>

Thoughts? Advice?

What should I ask the docs? What should I research?

Please know, that after all these years, I'm "OK" with the possibility of CF. I just wnat to know the CAUSE for him being so sick, so that we can treat whatever it is!

 

[JoyfulHeart]

Does this sound like CF in a 5 year old boy?

1st 2 years of life, had 24 episodes of croup/asthma
11 hospitalizations of pneumonia. Almost died. Lung collapse. ICU.
"uncontrollable" asthma (docs just keep medicating aargh!)
Constipation on and off his whole life
Low LOW immune system
Sinus infections (that dont respond to antibiotics)
Catscan showed Sinus blockage that appears to be pollups (ENT was alarmed)
Always "hot natured"-- kid could sweat in a snowstorm

Adnoids and tonsils removed at age 2 because of recurring problems.

He's got good weight -- 50th percentile at this pediatrician appt last week, but when he's sick he goes on eating strike and refuses all food/drinks until well again. (drives me nuts!!)

His pumlonologist, immunologist and pediatrician are concerned. They said he shows MANY symptoms of possible CF, or a strain of CF.

We go wednesday for the Sweat test and doing the genetic test same time. Thursday is bronchial scope and possible MRI (if insurance will cooperate)

<b>
UPDATE BELOW>>>>>>>></b>

Thoughts? Advice?

What should I ask the docs? What should I research?

Please know, that after all these years, I'm "OK" with the possibility of CF. I just wnat to know the CAUSE for him being so sick, so that we can treat whatever it is!

 

[JoyfulHeart]

Does this sound like CF in a 5 year old boy?

1st 2 years of life, had 24 episodes of croup/asthma
11 hospitalizations of pneumonia. Almost died. Lung collapse. ICU.
"uncontrollable" asthma (docs just keep medicating aargh!)
Constipation on and off his whole life
Low LOW immune system
Sinus infections (that dont respond to antibiotics)
Catscan showed Sinus blockage that appears to be pollups (ENT was alarmed)
Always "hot natured"-- kid could sweat in a snowstorm

Adnoids and tonsils removed at age 2 because of recurring problems.

He's got good weight -- 50th percentile at this pediatrician appt last week, but when he's sick he goes on eating strike and refuses all food/drinks until well again. (drives me nuts!!)

His pumlonologist, immunologist and pediatrician are concerned. They said he shows MANY symptoms of possible CF, or a strain of CF.

We go wednesday for the Sweat test and doing the genetic test same time. Thursday is bronchial scope and possible MRI (if insurance will cooperate)

<b>
UPDATE BELOW>>>>>>>></b>

Thoughts? Advice?

What should I ask the docs? What should I research?

Please know, that after all these years, I'm "OK" with the possibility of CF. I just wnat to know the CAUSE for him being so sick, so that we can treat whatever it is!

 

[robert321]

Waiting for Answers-- What to ask doc tomorrow?

Get that sweat chloride test and go from there, if indeed he has cf your dr. will give you info. on it. Hope yall find out whats wrong, I went for 14 years with "alergies and asthma" when it was really cf. When you find out what it is you can properly treat it and that helps a lot. We're all pulling for ya. Hang in there

 

[robert321]

Waiting for Answers-- What to ask doc tomorrow?

Get that sweat chloride test and go from there, if indeed he has cf your dr. will give you info. on it. Hope yall find out whats wrong, I went for 14 years with "alergies and asthma" when it was really cf. When you find out what it is you can properly treat it and that helps a lot. We're all pulling for ya. Hang in there

 

[robert321]

Waiting for Answers-- What to ask doc tomorrow?

Get that sweat chloride test and go from there, if indeed he has cf your dr. will give you info. on it. Hope yall find out whats wrong, I went for 14 years with "alergies and asthma" when it was really cf. When you find out what it is you can properly treat it and that helps a lot. We're all pulling for ya. Hang in there

 

[mum2kj]

Waiting for Answers-- What to ask doc tomorrow?

I am hoping for a report of No C/F, but if he does have it, all of the c/f treatments should get his symptoms under control.
Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

Waiting for Answers-- What to ask doc tomorrow?

I am hoping for a report of No C/F, but if he does have it, all of the c/f treatments should get his symptoms under control.
Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

Waiting for Answers-- What to ask doc tomorrow?

I am hoping for a report of No C/F, but if he does have it, all of the c/f treatments should get his symptoms under control.
Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Alyssa]

Waiting for Answers-- What to ask doc tomorrow?

Yes, that does sound like some classic symptoms and he could be pancreatic sufficient (therefore the weight is ok & the constipation). It is possible it's CF -- it's good to test so you will know one way or the other.

That's very good news that the doctors are willing to do both the sweat test and the genetic testing -- be sure to ask for FULL GENETIC testing. There are over 1400 genes to test for, it is pointless to test for anything less than all of them because you will still not know for sure!

Read my blog (link at the bottom with my signature) for info on borderline or negative sweat tests that could still mean CF.

The best thing is at least if you find out he does have CF, you can start treating him for CF -- in theory he should feel better/get sick a little less often if he starts getting things like CPT and Pulmozyme (both will help clear out the lungs)

Be sure to let us know what happens.

 

[Alyssa]

Waiting for Answers-- What to ask doc tomorrow?

Yes, that does sound like some classic symptoms and he could be pancreatic sufficient (therefore the weight is ok & the constipation). It is possible it's CF -- it's good to test so you will know one way or the other.

That's very good news that the doctors are willing to do both the sweat test and the genetic testing -- be sure to ask for FULL GENETIC testing. There are over 1400 genes to test for, it is pointless to test for anything less than all of them because you will still not know for sure!

Read my blog (link at the bottom with my signature) for info on borderline or negative sweat tests that could still mean CF.

The best thing is at least if you find out he does have CF, you can start treating him for CF -- in theory he should feel better/get sick a little less often if he starts getting things like CPT and Pulmozyme (both will help clear out the lungs)

Be sure to let us know what happens.

 

[Alyssa]

Waiting for Answers-- What to ask doc tomorrow?

Yes, that does sound like some classic symptoms and he could be pancreatic sufficient (therefore the weight is ok & the constipation). It is possible it's CF -- it's good to test so you will know one way or the other.

That's very good news that the doctors are willing to do both the sweat test and the genetic testing -- be sure to ask for FULL GENETIC testing. There are over 1400 genes to test for, it is pointless to test for anything less than all of them because you will still not know for sure!

Read my blog (link at the bottom with my signature) for info on borderline or negative sweat tests that could still mean CF.

The best thing is at least if you find out he does have CF, you can start treating him for CF -- in theory he should feel better/get sick a little less often if he starts getting things like CPT and Pulmozyme (both will help clear out the lungs)

Be sure to let us know what happens.

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

<b>I'm VERY VERY VERY FRUSTRATED!!!

AAARRRGGGHHHHHHHH</b>Doc said he agreed with suspicion of CF, BUT.......

Doc said he'll only agree to the sweat test, and a small genetics test that only tests the 32 most common CF strains.

He wants to rule out other stuff first. Which annyos me because I don't believe the things he wants to rule out are worth pursuing!

He wants to rule out lung deformity (that was done 2 years ago by another doc!! WHY are we doing that again????)

He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??)


MY BIGGEST FEAR out of all this is that IF ben IS a CF kid, that he doesn't show up and gets misdiagnosed all because a doc wasn't willing to get the full panel done. I worry that we will waste time and money and more hospital visits while we "rule out" everything else in the world! I worry that I'm wasting time that is valuable!!!!

Ok, pray that IF ben has CF (no i'm not hoping he does) but IF he does, that it shows up on the sweat test and the blood test. Otherwise I have to prove to this doc that it's not something else, before he'll agree to the test.

He's a good doc-- I've been told he's one of the best high-risk pediatric pulmonologists in the area.

I just want a definite answer, no matter what.


<img src="i/expressions/brokenheart.gif" border="0">

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

<b>I'm VERY VERY VERY FRUSTRATED!!!

AAARRRGGGHHHHHHHH</b>Doc said he agreed with suspicion of CF, BUT.......

Doc said he'll only agree to the sweat test, and a small genetics test that only tests the 32 most common CF strains.

He wants to rule out other stuff first. Which annyos me because I don't believe the things he wants to rule out are worth pursuing!

He wants to rule out lung deformity (that was done 2 years ago by another doc!! WHY are we doing that again????)

He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??)


MY BIGGEST FEAR out of all this is that IF ben IS a CF kid, that he doesn't show up and gets misdiagnosed all because a doc wasn't willing to get the full panel done. I worry that we will waste time and money and more hospital visits while we "rule out" everything else in the world! I worry that I'm wasting time that is valuable!!!!

Ok, pray that IF ben has CF (no i'm not hoping he does) but IF he does, that it shows up on the sweat test and the blood test. Otherwise I have to prove to this doc that it's not something else, before he'll agree to the test.

He's a good doc-- I've been told he's one of the best high-risk pediatric pulmonologists in the area.

I just want a definite answer, no matter what.


<img src="i/expressions/brokenheart.gif" border="0">

 

[JoyfulHeart]

Waiting for Answers-- What to ask doc tomorrow?

<b>I'm VERY VERY VERY FRUSTRATED!!!

AAARRRGGGHHHHHHHH</b>Doc said he agreed with suspicion of CF, BUT.......

Doc said he'll only agree to the sweat test, and a small genetics test that only tests the 32 most common CF strains.

He wants to rule out other stuff first. Which annyos me because I don't believe the things he wants to rule out are worth pursuing!

He wants to rule out lung deformity (that was done 2 years ago by another doc!! WHY are we doing that again????)

He wants to rule out reflux (kid has never had any problems before and does not even fit the profile for a reflux kid!!??)


MY BIGGEST FEAR out of all this is that IF ben IS a CF kid, that he doesn't show up and gets misdiagnosed all because a doc wasn't willing to get the full panel done. I worry that we will waste time and money and more hospital visits while we "rule out" everything else in the world! I worry that I'm wasting time that is valuable!!!!

Ok, pray that IF ben has CF (no i'm not hoping he does) but IF he does, that it shows up on the sweat test and the blood test. Otherwise I have to prove to this doc that it's not something else, before he'll agree to the test.

He's a good doc-- I've been told he's one of the best high-risk pediatric pulmonologists in the area.

I just want a definite answer, no matter what.


<img src="i/expressions/brokenheart.gif" border="0">

 

[anonymous]

Waiting for Answers-- What to ask doc tomorrow?

It is fairly normal for them to start genetic testing with the minimum test and then work up to the full panel if the first test shows no mutations. The full panel test is a lot more expensive and the insurance companies don't want to pay for the full blown test if the 1st test shows the mutations. Sucks, but it's the facts of life with insurance companies.

 

[anonymous]

Waiting for Answers-- What to ask doc tomorrow?

It is fairly normal for them to start genetic testing with the minimum test and then work up to the full panel if the first test shows no mutations. The full panel test is a lot more expensive and the insurance companies don't want to pay for the full blown test if the 1st test shows the mutations. Sucks, but it's the facts of life with insurance companies.

 

[anonymous]

Waiting for Answers-- What to ask doc tomorrow?

It is fairly normal for them to start genetic testing with the minimum test and then work up to the full panel if the first test shows no mutations. The full panel test is a lot more expensive and the insurance companies don't want to pay for the full blown test if the 1st test shows the mutations. Sucks, but it's the facts of life with insurance companies.

 

[sorels]

Waiting for Answers-- What to ask doc tomorrow?

the truth is sweat chloride tests dont come cheap...U must demand that ur son get a sweat test and that CF is what ur particularly worried about....dont take no for an answer....my mom battled the same thing with me and I was finall diagnosed at 2 yrs old....i started showing symptoms of CF at birth..a sweat test is the only thin that can rule out CF for sure....be firm with the next doc u talk to and let them know u mean business.....thew will try to look for everything else in the medical book before the give a sweat chloride test....Im tellin demand it....and if the doc says anything off the subject....u get back on the subject and say there is nothing else that u want....they have to listen to....the problem is that most parents r left in the dark about how they can fin out if there kid has CF....so now u know what to ask for....get'r done lol....good luck....DAN <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF patient

 

[sorels]

Waiting for Answers-- What to ask doc tomorrow?

the truth is sweat chloride tests dont come cheap...U must demand that ur son get a sweat test and that CF is what ur particularly worried about....dont take no for an answer....my mom battled the same thing with me and I was finall diagnosed at 2 yrs old....i started showing symptoms of CF at birth..a sweat test is the only thin that can rule out CF for sure....be firm with the next doc u talk to and let them know u mean business.....thew will try to look for everything else in the medical book before the give a sweat chloride test....Im tellin demand it....and if the doc says anything off the subject....u get back on the subject and say there is nothing else that u want....they have to listen to....the problem is that most parents r left in the dark about how they can fin out if there kid has CF....so now u know what to ask for....get'r done lol....good luck....DAN <img src="i/expressions/face-icon-small-smile.gif" border="0"> CF patient