HELP

[emilyspeanut]

it is more the pulmonologist that gets snippy. His CF doctor is ony there 1 day a week and he is the only one that is there. I do like his CF doctor and like I said I am new t this. They know me by first name.. thats pretty bad! LOL My friends pediatrition wont even see her daughter unless it is for regualr physicals or shots. I guess it will all become second nature after time. I just asked my son how he feels and he tld me his chest hurts and he wants to stop coughing. I wish I could take this all away.

 

[emilyspeanut]

it is more the pulmonologist that gets snippy. His CF doctor is ony there 1 day a week and he is the only one that is there. I do like his CF doctor and like I said I am new t this. They know me by first name.. thats pretty bad! LOL My friends pediatrition wont even see her daughter unless it is for regualr physicals or shots. I guess it will all become second nature after time. I just asked my son how he feels and he tld me his chest hurts and he wants to stop coughing. I wish I could take this all away.

 

[emilyspeanut]

it is more the pulmonologist that gets snippy. His CF doctor is ony there 1 day a week and he is the only one that is there. I do like his CF doctor and like I said I am new t this. They know me by first name.. thats pretty bad! LOL My friends pediatrition wont even see her daughter unless it is for regualr physicals or shots. I guess it will all become second nature after time. I just asked my son how he feels and he tld me his chest hurts and he wants to stop coughing. I wish I could take this all away.

 

[emilyspeanut]

it is more the pulmonologist that gets snippy. His CF doctor is ony there 1 day a week and he is the only one that is there. I do like his CF doctor and like I said I am new t this. They know me by first name.. thats pretty bad! LOL My friends pediatrition wont even see her daughter unless it is for regualr physicals or shots. I guess it will all become second nature after time. I just asked my son how he feels and he tld me his chest hurts and he wants to stop coughing. I wish I could take this all away.

 

[emilyspeanut]

it is more the pulmonologist that gets snippy. His CF doctor is ony there 1 day a week and he is the only one that is there. I do like his CF doctor and like I said I am new t this. They know me by first name.. thats pretty bad! LOL My friends pediatrition wont even see her daughter unless it is for regualr physicals or shots. I guess it will all become second nature after time. I just asked my son how he feels and he tld me his chest hurts and he wants to stop coughing. I wish I could take this all away.

 

[Rebjane]

Stacey,

I agree you should call the CF doctor. They are the one who knows what your child cultures and what antibiotic is appropriate. I have gotten over the worry that I am bothering the CF doc. It is their job. For stuff that is about my daughter's enzymes, diet, etc I call the nutritionist. For something not urgent or looking for input/advice I'll call the CF nurse. FOr what you are describing a sick cough I would go right to calling the CF doc.

 

[Rebjane]

Stacey,

I agree you should call the CF doctor. They are the one who knows what your child cultures and what antibiotic is appropriate. I have gotten over the worry that I am bothering the CF doc. It is their job. For stuff that is about my daughter's enzymes, diet, etc I call the nutritionist. For something not urgent or looking for input/advice I'll call the CF nurse. FOr what you are describing a sick cough I would go right to calling the CF doc.

 

[Rebjane]

Stacey,

I agree you should call the CF doctor. They are the one who knows what your child cultures and what antibiotic is appropriate. I have gotten over the worry that I am bothering the CF doc. It is their job. For stuff that is about my daughter's enzymes, diet, etc I call the nutritionist. For something not urgent or looking for input/advice I'll call the CF nurse. FOr what you are describing a sick cough I would go right to calling the CF doc.

 

[Rebjane]

Stacey,

I agree you should call the CF doctor. They are the one who knows what your child cultures and what antibiotic is appropriate. I have gotten over the worry that I am bothering the CF doc. It is their job. For stuff that is about my daughter's enzymes, diet, etc I call the nutritionist. For something not urgent or looking for input/advice I'll call the CF nurse. FOr what you are describing a sick cough I would go right to calling the CF doc.

 

[Rebjane]

Stacey,
<br />
<br />I agree you should call the CF doctor. They are the one who knows what your child cultures and what antibiotic is appropriate. I have gotten over the worry that I am bothering the CF doc. It is their job. For stuff that is about my daughter's enzymes, diet, etc I call the nutritionist. For something not urgent or looking for input/advice I'll call the CF nurse. FOr what you are describing a sick cough I would go right to calling the CF doc.

 

[hmw]

I'm so sorry that the doctor is like this when you try to speak to him. That is not right!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

As Rebecca said above, I have separate contact info for our nutritionist and social worker (Email addresses and their own phone extensions) and would contact them directly with concerns relating to what they do for us. But for the most part, when Emily is sick- we rarely call the ped first anymore. Even when an illness doesn't seem directly related to cf, I tend to want their input due to how cf affects so many body systems and if they then want me to call the ped I will. Generally they don't! They just don't understand cf well enough, aren't familiar enough with her treatments, and can't effectively prescribe antibiotics the way the cf team can- they culture her every two months and know what will work for her (and her ped can't wrap his head around the fact that 10 days of abx just isn't enough.)

Fortunately, even though the entire cf team is only there all at once on clinic days (two days/wk) there is a cf dr there daily and our nurse is there daily. So we've never been stuck having to deal with a general pulmonologist. There is definitely something to be said for a clinic having multiple cf drs on staff... sometimes I wish we could see the same one at each visit, but having several does ensure one is always around when you need one.

I agree the chest pain is a red flag for calling in, esp since the cough has been going on for a while and apparently getting worse. When Emily experiences chest pain she's pretty sick. If this is a recurrent thing for him he might need an adjustment in his medications to help deal with it OR it could be a sign of something like bronchitis or pneumonia (a ped telling you the chest 'sounds clear' can be completely meaningless); only the doctor can tell you for sure by discussing whatever else is going on with him. I wish the best and hope he's feeling better soon.

 

[hmw]

I'm so sorry that the doctor is like this when you try to speak to him. That is not right!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

As Rebecca said above, I have separate contact info for our nutritionist and social worker (Email addresses and their own phone extensions) and would contact them directly with concerns relating to what they do for us. But for the most part, when Emily is sick- we rarely call the ped first anymore. Even when an illness doesn't seem directly related to cf, I tend to want their input due to how cf affects so many body systems and if they then want me to call the ped I will. Generally they don't! They just don't understand cf well enough, aren't familiar enough with her treatments, and can't effectively prescribe antibiotics the way the cf team can- they culture her every two months and know what will work for her (and her ped can't wrap his head around the fact that 10 days of abx just isn't enough.)

Fortunately, even though the entire cf team is only there all at once on clinic days (two days/wk) there is a cf dr there daily and our nurse is there daily. So we've never been stuck having to deal with a general pulmonologist. There is definitely something to be said for a clinic having multiple cf drs on staff... sometimes I wish we could see the same one at each visit, but having several does ensure one is always around when you need one.

I agree the chest pain is a red flag for calling in, esp since the cough has been going on for a while and apparently getting worse. When Emily experiences chest pain she's pretty sick. If this is a recurrent thing for him he might need an adjustment in his medications to help deal with it OR it could be a sign of something like bronchitis or pneumonia (a ped telling you the chest 'sounds clear' can be completely meaningless); only the doctor can tell you for sure by discussing whatever else is going on with him. I wish the best and hope he's feeling better soon.

 

[hmw]

I'm so sorry that the doctor is like this when you try to speak to him. That is not right!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

As Rebecca said above, I have separate contact info for our nutritionist and social worker (Email addresses and their own phone extensions) and would contact them directly with concerns relating to what they do for us. But for the most part, when Emily is sick- we rarely call the ped first anymore. Even when an illness doesn't seem directly related to cf, I tend to want their input due to how cf affects so many body systems and if they then want me to call the ped I will. Generally they don't! They just don't understand cf well enough, aren't familiar enough with her treatments, and can't effectively prescribe antibiotics the way the cf team can- they culture her every two months and know what will work for her (and her ped can't wrap his head around the fact that 10 days of abx just isn't enough.)

Fortunately, even though the entire cf team is only there all at once on clinic days (two days/wk) there is a cf dr there daily and our nurse is there daily. So we've never been stuck having to deal with a general pulmonologist. There is definitely something to be said for a clinic having multiple cf drs on staff... sometimes I wish we could see the same one at each visit, but having several does ensure one is always around when you need one.

I agree the chest pain is a red flag for calling in, esp since the cough has been going on for a while and apparently getting worse. When Emily experiences chest pain she's pretty sick. If this is a recurrent thing for him he might need an adjustment in his medications to help deal with it OR it could be a sign of something like bronchitis or pneumonia (a ped telling you the chest 'sounds clear' can be completely meaningless); only the doctor can tell you for sure by discussing whatever else is going on with him. I wish the best and hope he's feeling better soon.

 

[hmw]

I'm so sorry that the doctor is like this when you try to speak to him. That is not right!! <img src="i/expressions/face-icon-small-sad.gif" border="0">

As Rebecca said above, I have separate contact info for our nutritionist and social worker (Email addresses and their own phone extensions) and would contact them directly with concerns relating to what they do for us. But for the most part, when Emily is sick- we rarely call the ped first anymore. Even when an illness doesn't seem directly related to cf, I tend to want their input due to how cf affects so many body systems and if they then want me to call the ped I will. Generally they don't! They just don't understand cf well enough, aren't familiar enough with her treatments, and can't effectively prescribe antibiotics the way the cf team can- they culture her every two months and know what will work for her (and her ped can't wrap his head around the fact that 10 days of abx just isn't enough.)

Fortunately, even though the entire cf team is only there all at once on clinic days (two days/wk) there is a cf dr there daily and our nurse is there daily. So we've never been stuck having to deal with a general pulmonologist. There is definitely something to be said for a clinic having multiple cf drs on staff... sometimes I wish we could see the same one at each visit, but having several does ensure one is always around when you need one.

I agree the chest pain is a red flag for calling in, esp since the cough has been going on for a while and apparently getting worse. When Emily experiences chest pain she's pretty sick. If this is a recurrent thing for him he might need an adjustment in his medications to help deal with it OR it could be a sign of something like bronchitis or pneumonia (a ped telling you the chest 'sounds clear' can be completely meaningless); only the doctor can tell you for sure by discussing whatever else is going on with him. I wish the best and hope he's feeling better soon.

 

[hmw]

I'm so sorry that the doctor is like this when you try to speak to him. That is not right!! <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />As Rebecca said above, I have separate contact info for our nutritionist and social worker (Email addresses and their own phone extensions) and would contact them directly with concerns relating to what they do for us. But for the most part, when Emily is sick- we rarely call the ped first anymore. Even when an illness doesn't seem directly related to cf, I tend to want their input due to how cf affects so many body systems and if they then want me to call the ped I will. Generally they don't! They just don't understand cf well enough, aren't familiar enough with her treatments, and can't effectively prescribe antibiotics the way the cf team can- they culture her every two months and know what will work for her (and her ped can't wrap his head around the fact that 10 days of abx just isn't enough.)
<br />
<br />Fortunately, even though the entire cf team is only there all at once on clinic days (two days/wk) there is a cf dr there daily and our nurse is there daily. So we've never been stuck having to deal with a general pulmonologist. There is definitely something to be said for a clinic having multiple cf drs on staff... sometimes I wish we could see the same one at each visit, but having several does ensure one is always around when you need one.
<br />
<br />I agree the chest pain is a red flag for calling in, esp since the cough has been going on for a while and apparently getting worse. When Emily experiences chest pain she's pretty sick. If this is a recurrent thing for him he might need an adjustment in his medications to help deal with it OR it could be a sign of something like bronchitis or pneumonia (a ped telling you the chest 'sounds clear' can be completely meaningless); only the doctor can tell you for sure by discussing whatever else is going on with him. I wish the best and hope he's feeling better soon.

 

[Cherylwithone]

I agree with the rest. Call the CF Doc. That is what they are there for. We only use the primary for normal stuff.
CF for cf stuff, ENT for sinus, GI for anything GI and
endocrin for that stuff and so on. PFT's can tell you what is going on and so can cultures.

Good luck and don't feel bad. This is your child.

 

[Cherylwithone]

I agree with the rest. Call the CF Doc. That is what they are there for. We only use the primary for normal stuff.
CF for cf stuff, ENT for sinus, GI for anything GI and
endocrin for that stuff and so on. PFT's can tell you what is going on and so can cultures.

Good luck and don't feel bad. This is your child.

 

[Cherylwithone]

I agree with the rest. Call the CF Doc. That is what they are there for. We only use the primary for normal stuff.
CF for cf stuff, ENT for sinus, GI for anything GI and
endocrin for that stuff and so on. PFT's can tell you what is going on and so can cultures.

Good luck and don't feel bad. This is your child.

 

[Cherylwithone]

I agree with the rest. Call the CF Doc. That is what they are there for. We only use the primary for normal stuff.
CF for cf stuff, ENT for sinus, GI for anything GI and
endocrin for that stuff and so on. PFT's can tell you what is going on and so can cultures.

Good luck and don't feel bad. This is your child.

 

[Cherylwithone]

I agree with the rest. Call the CF Doc. That is what they are there for. We only use the primary for normal stuff.
<br />CF for cf stuff, ENT for sinus, GI for anything GI and
<br />endocrin for that stuff and so on. PFT's can tell you what is going on and so can cultures.
<br />
<br />Good luck and don't feel bad. This is your child.