How often are your regularly-scheduled clinic visits?

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MaksNana

New member
Boy that's a tough one for us right now ....... When she was first diagnoised it was about every 6 weeks for awhile, until they got her some what stable after having pneumonia so many times, and asthma , and she caught RSV, and at that time ,and we almost lost her........ And now, for about 6months, she has been pretty much seen weekly,,,,, for labs, x-rays, PFT's, monitering wt, and GI issues......We always see the dietian, social worker,etc. She has had General Anathesia 2times and Feb 15th will make it 3 times,,,,, and has has sedation a few times, and this past xmas was admitted and put on Morphine around the clock along with other pain meds (we were scared out of our minds).

The norm,,,,,,,, is every 3months. Always get cultures , PFT'S, and xrays, lab...........But, alot of home treatments of antibiotics without her being seen . That's due to , it's safer to treat at home than the risk of the 'bugs' just by walking into the clinic.........We also , live pretty much with the pedi doctor, they talk with the CF/GI Clinic with anything inless it's like strep throat or something like that.

She has never had a CT scan of her lungs but so many x-rays I can't count. She has had a CT scan due to polyps/sinus issues, had the surgery, and hasn't had problems with the polyps but alot of thick drainage goes down the back of her throat,(even though they removed turbalants and her adnoids at the same time). I have always wanted a CT of her lungs........

Bless you on your journey, we will be here to help you always,,,,,,,,,,,Karla
 
M

MaksNana

New member
Boy that's a tough one for us right now ....... When she was first diagnoised it was about every 6 weeks for awhile, until they got her some what stable after having pneumonia so many times, and asthma , and she caught RSV, and at that time ,and we almost lost her........ And now, for about 6months, she has been pretty much seen weekly,,,,, for labs, x-rays, PFT's, monitering wt, and GI issues......We always see the dietian, social worker,etc. She has had General Anathesia 2times and Feb 15th will make it 3 times,,,,, and has has sedation a few times, and this past xmas was admitted and put on Morphine around the clock along with other pain meds (we were scared out of our minds).

The norm,,,,,,,, is every 3months. Always get cultures , PFT'S, and xrays, lab...........But, alot of home treatments of antibiotics without her being seen . That's due to , it's safer to treat at home than the risk of the 'bugs' just by walking into the clinic.........We also , live pretty much with the pedi doctor, they talk with the CF/GI Clinic with anything inless it's like strep throat or something like that.

She has never had a CT scan of her lungs but so many x-rays I can't count. She has had a CT scan due to polyps/sinus issues, had the surgery, and hasn't had problems with the polyps but alot of thick drainage goes down the back of her throat,(even though they removed turbalants and her adnoids at the same time). I have always wanted a CT of her lungs........

Bless you on your journey, we will be here to help you always,,,,,,,,,,,Karla
 
M

MaksNana

New member
Boy that's a tough one for us right now ....... When she was first diagnoised it was about every 6 weeks for awhile, until they got her some what stable after having pneumonia so many times, and asthma , and she caught RSV, and at that time ,and we almost lost her........ And now, for about 6months, she has been pretty much seen weekly,,,,, for labs, x-rays, PFT's, monitering wt, and GI issues......We always see the dietian, social worker,etc. She has had General Anathesia 2times and Feb 15th will make it 3 times,,,,, and has has sedation a few times, and this past xmas was admitted and put on Morphine around the clock along with other pain meds (we were scared out of our minds).

The norm,,,,,,,, is every 3months. Always get cultures , PFT'S, and xrays, lab...........But, alot of home treatments of antibiotics without her being seen . That's due to , it's safer to treat at home than the risk of the 'bugs' just by walking into the clinic.........We also , live pretty much with the pedi doctor, they talk with the CF/GI Clinic with anything inless it's like strep throat or something like that.

She has never had a CT scan of her lungs but so many x-rays I can't count. She has had a CT scan due to polyps/sinus issues, had the surgery, and hasn't had problems with the polyps but alot of thick drainage goes down the back of her throat,(even though they removed turbalants and her adnoids at the same time). I have always wanted a CT of her lungs........

Bless you on your journey, we will be here to help you always,,,,,,,,,,,Karla
 
M

MaksNana

New member
Boy that's a tough one for us right now ....... When she was first diagnoised it was about every 6 weeks for awhile, until they got her some what stable after having pneumonia so many times, and asthma , and she caught RSV, and at that time ,and we almost lost her........ And now, for about 6months, she has been pretty much seen weekly,,,,, for labs, x-rays, PFT's, monitering wt, and GI issues......We always see the dietian, social worker,etc. She has had General Anathesia 2times and Feb 15th will make it 3 times,,,,, and has has sedation a few times, and this past xmas was admitted and put on Morphine around the clock along with other pain meds (we were scared out of our minds).

The norm,,,,,,,, is every 3months. Always get cultures , PFT'S, and xrays, lab...........But, alot of home treatments of antibiotics without her being seen . That's due to , it's safer to treat at home than the risk of the 'bugs' just by walking into the clinic.........We also , live pretty much with the pedi doctor, they talk with the CF/GI Clinic with anything inless it's like strep throat or something like that.

She has never had a CT scan of her lungs but so many x-rays I can't count. She has had a CT scan due to polyps/sinus issues, had the surgery, and hasn't had problems with the polyps but alot of thick drainage goes down the back of her throat,(even though they removed turbalants and her adnoids at the same time). I have always wanted a CT of her lungs........

Bless you on your journey, we will be here to help you always,,,,,,,,,,,Karla
 
M

MaksNana

New member
Boy that's a tough one for us right now ....... When she was first diagnoised it was about every 6 weeks for awhile, until they got her some what stable after having pneumonia so many times, and asthma , and she caught RSV, and at that time ,and we almost lost her........ And now, for about 6months, she has been pretty much seen weekly,,,,, for labs, x-rays, PFT's, monitering wt, and GI issues......We always see the dietian, social worker,etc. She has had General Anathesia 2times and Feb 15th will make it 3 times,,,,, and has has sedation a few times, and this past xmas was admitted and put on Morphine around the clock along with other pain meds (we were scared out of our minds).
<br />
<br />The norm,,,,,,,, is every 3months. Always get cultures , PFT'S, and xrays, lab...........But, alot of home treatments of antibiotics without her being seen . That's due to , it's safer to treat at home than the risk of the 'bugs' just by walking into the clinic.........We also , live pretty much with the pedi doctor, they talk with the CF/GI Clinic with anything inless it's like strep throat or something like that.
<br />
<br />She has never had a CT scan of her lungs but so many x-rays I can't count. She has had a CT scan due to polyps/sinus issues, had the surgery, and hasn't had problems with the polyps but alot of thick drainage goes down the back of her throat,(even though they removed turbalants and her adnoids at the same time). I have always wanted a CT of her lungs........
<br />
<br />Bless you on your journey, we will be here to help you always,,,,,,,,,,,Karla
 
M

Marjolein

New member
I always went every 6 weeks.

Up till I was about 12 I still saw my local pediatrician too. He was very good at treating me and always talked to my CF specialist. I used to go to my local hospital, six weeks later to my CF center and six weeks after that to my local again, so on and so on.

When I got older I only went to my CF specialist. Every six weeks.
 
M

Marjolein

New member
I always went every 6 weeks.

Up till I was about 12 I still saw my local pediatrician too. He was very good at treating me and always talked to my CF specialist. I used to go to my local hospital, six weeks later to my CF center and six weeks after that to my local again, so on and so on.

When I got older I only went to my CF specialist. Every six weeks.
 
M

Marjolein

New member
I always went every 6 weeks.

Up till I was about 12 I still saw my local pediatrician too. He was very good at treating me and always talked to my CF specialist. I used to go to my local hospital, six weeks later to my CF center and six weeks after that to my local again, so on and so on.

When I got older I only went to my CF specialist. Every six weeks.
 
M

Marjolein

New member
I always went every 6 weeks.

Up till I was about 12 I still saw my local pediatrician too. He was very good at treating me and always talked to my CF specialist. I used to go to my local hospital, six weeks later to my CF center and six weeks after that to my local again, so on and so on.

When I got older I only went to my CF specialist. Every six weeks.
 
M

Marjolein

New member
I always went every 6 weeks.
<br />
<br />Up till I was about 12 I still saw my local pediatrician too. He was very good at treating me and always talked to my CF specialist. I used to go to my local hospital, six weeks later to my CF center and six weeks after that to my local again, so on and so on.
<br />
<br />When I got older I only went to my CF specialist. Every six weeks.
 
M

Mommafirst

Guest
We are scheduled for clinic every 3 months -- we see the pulm and the nutritionist at these, sometimes we'll see others as needed.

Once a year we get the BIG visit where we must see every part of the team for her care....pulm, nutritionist, social worker, geneticist, PT, RT, and CF nurse.

Because of weight issues, we've been going much more frequently though. Overall, we go just about once a month or once every 6 weeks.
 
M

Mommafirst

Guest
We are scheduled for clinic every 3 months -- we see the pulm and the nutritionist at these, sometimes we'll see others as needed.

Once a year we get the BIG visit where we must see every part of the team for her care....pulm, nutritionist, social worker, geneticist, PT, RT, and CF nurse.

Because of weight issues, we've been going much more frequently though. Overall, we go just about once a month or once every 6 weeks.
 
M

Mommafirst

Guest
We are scheduled for clinic every 3 months -- we see the pulm and the nutritionist at these, sometimes we'll see others as needed.

Once a year we get the BIG visit where we must see every part of the team for her care....pulm, nutritionist, social worker, geneticist, PT, RT, and CF nurse.

Because of weight issues, we've been going much more frequently though. Overall, we go just about once a month or once every 6 weeks.
 
M

Mommafirst

Guest
We are scheduled for clinic every 3 months -- we see the pulm and the nutritionist at these, sometimes we'll see others as needed.

Once a year we get the BIG visit where we must see every part of the team for her care....pulm, nutritionist, social worker, geneticist, PT, RT, and CF nurse.

Because of weight issues, we've been going much more frequently though. Overall, we go just about once a month or once every 6 weeks.
 
M

Mommafirst

Guest
We are scheduled for clinic every 3 months -- we see the pulm and the nutritionist at these, sometimes we'll see others as needed.
<br />
<br />Once a year we get the BIG visit where we must see every part of the team for her care....pulm, nutritionist, social worker, geneticist, PT, RT, and CF nurse.
<br />
<br />Because of weight issues, we've been going much more frequently though. Overall, we go just about once a month or once every 6 weeks.
 
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