having issues

2

2sickkids

Guest
I have been having problems for awhile. Couple issues with both kids. One of my boys is treated for liver the other is not. Even though his numbers are always too high. My (treated for liver)youngest is having issues with kidneys. Ped thinks it's cf related renal. Cf doc says cf doesn't effect the kidneys. Oldest had pneu and 9lbs weight drop. When I called cf like ped said I was told let ped deal with it. He is sick again and the ped had cf dr paged. Cf doc called back and asked why I called. I said the ped did it not me. I was told well I'm going to call and let them know to stop bothering me for every little thing.

If we drop cf doc can we still see other parts of the cf team? What should I do? Really want to switch to a diff pulm. My ped is dealing with the normal and cf issues. I don't think it's fair to my kids or the peds other kids.
 
2

2sickkids

Guest
I have been having problems for awhile. Couple issues with both kids. One of my boys is treated for liver the other is not. Even though his numbers are always too high. My (treated for liver)youngest is having issues with kidneys. Ped thinks it's cf related renal. Cf doc says cf doesn't effect the kidneys. Oldest had pneu and 9lbs weight drop. When I called cf like ped said I was told let ped deal with it. He is sick again and the ped had cf dr paged. Cf doc called back and asked why I called. I said the ped did it not me. I was told well I'm going to call and let them know to stop bothering me for every little thing.

If we drop cf doc can we still see other parts of the cf team? What should I do? Really want to switch to a diff pulm. My ped is dealing with the normal and cf issues. I don't think it's fair to my kids or the peds other kids.
 
2

2sickkids

Guest
I have been having problems for awhile. Couple issues with both kids. One of my boys is treated for liver the other is not. Even though his numbers are always too high. My (treated for liver)youngest is having issues with kidneys. Ped thinks it's cf related renal. Cf doc says cf doesn't effect the kidneys. Oldest had pneu and 9lbs weight drop. When I called cf like ped said I was told let ped deal with it. He is sick again and the ped had cf dr paged. Cf doc called back and asked why I called. I said the ped did it not me. I was told well I'm going to call and let them know to stop bothering me for every little thing.

If we drop cf doc can we still see other parts of the cf team? What should I do? Really want to switch to a diff pulm. My ped is dealing with the normal and cf issues. I don't think it's fair to my kids or the peds other kids.
 
2

2sickkids

Guest
I have been having problems for awhile. Couple issues with both kids. One of my boys is treated for liver the other is not. Even though his numbers are always too high. My (treated for liver)youngest is having issues with kidneys. Ped thinks it's cf related renal. Cf doc says cf doesn't effect the kidneys. Oldest had pneu and 9lbs weight drop. When I called cf like ped said I was told let ped deal with it. He is sick again and the ped had cf dr paged. Cf doc called back and asked why I called. I said the ped did it not me. I was told well I'm going to call and let them know to stop bothering me for every little thing.

If we drop cf doc can we still see other parts of the cf team? What should I do? Really want to switch to a diff pulm. My ped is dealing with the normal and cf issues. I don't think it's fair to my kids or the peds other kids.
 
2

2sickkids

Guest
I have been having problems for awhile. Couple issues with both kids. One of my boys is treated for liver the other is not. Even though his numbers are always too high. My (treated for liver)youngest is having issues with kidneys. Ped thinks it's cf related renal. Cf doc says cf doesn't effect the kidneys. Oldest had pneu and 9lbs weight drop. When I called cf like ped said I was told let ped deal with it. He is sick again and the ped had cf dr paged. Cf doc called back and asked why I called. I said the ped did it not me. I was told well I'm going to call and let them know to stop bothering me for every little thing.
<br />
<br />If we drop cf doc can we still see other parts of the cf team? What should I do? Really want to switch to a diff pulm. My ped is dealing with the normal and cf issues. I don't think it's fair to my kids or the peds other kids.
 
M

Mommafirst

Guest
I would be super peeved if my CF doc implied I was 'bothering him for every little thing' CF is a scary world and you deserve to be reassured. Our CF doc and the whole center has a policy of wanted to be consulted with any respiratory or digestive illness they develop. And any other organ they would want to be part of the consult for those issues as well. When my daughter had a stomach flu my CF nurse said to call the ped, but if she started to dehydrate they wanted to know. They definitely want to bea part of her overall care. So all that being said, I would definitely look into changing CF docs, because your kids deserve better care than this. You deserve a doctor whom you aren't afraid will roll his eyes at you when you mention something.

Do you have options for another pulm doc at this center? Or do you have another center that is a reasonably close distance? If not, have you considered switching to a non-CF center pulm? I absolutely agree with you, you need to look into a change.
 
M

Mommafirst

Guest
I would be super peeved if my CF doc implied I was 'bothering him for every little thing' CF is a scary world and you deserve to be reassured. Our CF doc and the whole center has a policy of wanted to be consulted with any respiratory or digestive illness they develop. And any other organ they would want to be part of the consult for those issues as well. When my daughter had a stomach flu my CF nurse said to call the ped, but if she started to dehydrate they wanted to know. They definitely want to bea part of her overall care. So all that being said, I would definitely look into changing CF docs, because your kids deserve better care than this. You deserve a doctor whom you aren't afraid will roll his eyes at you when you mention something.

Do you have options for another pulm doc at this center? Or do you have another center that is a reasonably close distance? If not, have you considered switching to a non-CF center pulm? I absolutely agree with you, you need to look into a change.
 
M

Mommafirst

Guest
I would be super peeved if my CF doc implied I was 'bothering him for every little thing' CF is a scary world and you deserve to be reassured. Our CF doc and the whole center has a policy of wanted to be consulted with any respiratory or digestive illness they develop. And any other organ they would want to be part of the consult for those issues as well. When my daughter had a stomach flu my CF nurse said to call the ped, but if she started to dehydrate they wanted to know. They definitely want to bea part of her overall care. So all that being said, I would definitely look into changing CF docs, because your kids deserve better care than this. You deserve a doctor whom you aren't afraid will roll his eyes at you when you mention something.

Do you have options for another pulm doc at this center? Or do you have another center that is a reasonably close distance? If not, have you considered switching to a non-CF center pulm? I absolutely agree with you, you need to look into a change.
 
M

Mommafirst

Guest
I would be super peeved if my CF doc implied I was 'bothering him for every little thing' CF is a scary world and you deserve to be reassured. Our CF doc and the whole center has a policy of wanted to be consulted with any respiratory or digestive illness they develop. And any other organ they would want to be part of the consult for those issues as well. When my daughter had a stomach flu my CF nurse said to call the ped, but if she started to dehydrate they wanted to know. They definitely want to bea part of her overall care. So all that being said, I would definitely look into changing CF docs, because your kids deserve better care than this. You deserve a doctor whom you aren't afraid will roll his eyes at you when you mention something.

Do you have options for another pulm doc at this center? Or do you have another center that is a reasonably close distance? If not, have you considered switching to a non-CF center pulm? I absolutely agree with you, you need to look into a change.
 
M

Mommafirst

Guest
I would be super peeved if my CF doc implied I was 'bothering him for every little thing' CF is a scary world and you deserve to be reassured. Our CF doc and the whole center has a policy of wanted to be consulted with any respiratory or digestive illness they develop. And any other organ they would want to be part of the consult for those issues as well. When my daughter had a stomach flu my CF nurse said to call the ped, but if she started to dehydrate they wanted to know. They definitely want to bea part of her overall care. So all that being said, I would definitely look into changing CF docs, because your kids deserve better care than this. You deserve a doctor whom you aren't afraid will roll his eyes at you when you mention something.
<br />
<br />Do you have options for another pulm doc at this center? Or do you have another center that is a reasonably close distance? If not, have you considered switching to a non-CF center pulm? I absolutely agree with you, you need to look into a change.
 
K

kathiel

New member
The CF dr we use sees m daughter more than her pediatrician does. They want to know if her cough increases, is more productive, if she is sleeping more, every little thing. They tell me f I have any questions call them first and talk to the nurse and she consults with the dr to decide if they want to see her and if not who I should see...ped, GI, nutrition...whoever, and if I have a problem getting an appointment with that person they will get it for me.
 
K

kathiel

New member
The CF dr we use sees m daughter more than her pediatrician does. They want to know if her cough increases, is more productive, if she is sleeping more, every little thing. They tell me f I have any questions call them first and talk to the nurse and she consults with the dr to decide if they want to see her and if not who I should see...ped, GI, nutrition...whoever, and if I have a problem getting an appointment with that person they will get it for me.
 
K

kathiel

New member
The CF dr we use sees m daughter more than her pediatrician does. They want to know if her cough increases, is more productive, if she is sleeping more, every little thing. They tell me f I have any questions call them first and talk to the nurse and she consults with the dr to decide if they want to see her and if not who I should see...ped, GI, nutrition...whoever, and if I have a problem getting an appointment with that person they will get it for me.
 
K

kathiel

New member
The CF dr we use sees m daughter more than her pediatrician does. They want to know if her cough increases, is more productive, if she is sleeping more, every little thing. They tell me f I have any questions call them first and talk to the nurse and she consults with the dr to decide if they want to see her and if not who I should see...ped, GI, nutrition...whoever, and if I have a problem getting an appointment with that person they will get it for me.
 
K

kathiel

New member
The CF dr we use sees m daughter more than her pediatrician does. They want to know if her cough increases, is more productive, if she is sleeping more, every little thing. They tell me f I have any questions call them first and talk to the nurse and she consults with the dr to decide if they want to see her and if not who I should see...ped, GI, nutrition...whoever, and if I have a problem getting an appointment with that person they will get it for me.
 
2

2sickkids

Guest
What gets me is that each of the issues has come with weight lose fever lung prob.The ped is doing labs xray lungs meds. We have been to the peds on days the office was closed. So they could check the boys. I don't call the cf doc. Even the ped has come to the point. I am planning on switching to my pulm. I have an appt today so ped can check oldest. Because cf doc said it's not my department. I know this is going to be bad. Second time ped had sent him to er to have him put in only to have the cf say no.
 
2

2sickkids

Guest
What gets me is that each of the issues has come with weight lose fever lung prob.The ped is doing labs xray lungs meds. We have been to the peds on days the office was closed. So they could check the boys. I don't call the cf doc. Even the ped has come to the point. I am planning on switching to my pulm. I have an appt today so ped can check oldest. Because cf doc said it's not my department. I know this is going to be bad. Second time ped had sent him to er to have him put in only to have the cf say no.
 
2

2sickkids

Guest
What gets me is that each of the issues has come with weight lose fever lung prob.The ped is doing labs xray lungs meds. We have been to the peds on days the office was closed. So they could check the boys. I don't call the cf doc. Even the ped has come to the point. I am planning on switching to my pulm. I have an appt today so ped can check oldest. Because cf doc said it's not my department. I know this is going to be bad. Second time ped had sent him to er to have him put in only to have the cf say no.
 
2

2sickkids

Guest
What gets me is that each of the issues has come with weight lose fever lung prob.The ped is doing labs xray lungs meds. We have been to the peds on days the office was closed. So they could check the boys. I don't call the cf doc. Even the ped has come to the point. I am planning on switching to my pulm. I have an appt today so ped can check oldest. Because cf doc said it's not my department. I know this is going to be bad. Second time ped had sent him to er to have him put in only to have the cf say no.
 
2

2sickkids

Guest
What gets me is that each of the issues has come with weight lose fever lung prob.The ped is doing labs xray lungs meds. We have been to the peds on days the office was closed. So they could check the boys. I don't call the cf doc. Even the ped has come to the point. I am planning on switching to my pulm. I have an appt today so ped can check oldest. Because cf doc said it's not my department. I know this is going to be bad. Second time ped had sent him to er to have him put in only to have the cf say no.
 
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