Dr. says daughter has CF

A

Alyssa

New member
Welcome to the site. Sorry for the diagnosis.

Like Heather said there are a few very rare instances when something else could cause an elevated sweat chloride number but not very often. And if your doctor had any indication that something else was causing it, he/she probably would have been very careful with the wording chosen and not said she has CF.

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.

Best wishes - keep posting and please let us know what happens with your other daughter.
 
A

Alyssa

New member
Welcome to the site. Sorry for the diagnosis.

Like Heather said there are a few very rare instances when something else could cause an elevated sweat chloride number but not very often. And if your doctor had any indication that something else was causing it, he/she probably would have been very careful with the wording chosen and not said she has CF.

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.

Best wishes - keep posting and please let us know what happens with your other daughter.
 
A

Alyssa

New member
Welcome to the site. Sorry for the diagnosis.

Like Heather said there are a few very rare instances when something else could cause an elevated sweat chloride number but not very often. And if your doctor had any indication that something else was causing it, he/she probably would have been very careful with the wording chosen and not said she has CF.

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.

Best wishes - keep posting and please let us know what happens with your other daughter.
 
A

Alyssa

New member
Welcome to the site. Sorry for the diagnosis.

Like Heather said there are a few very rare instances when something else could cause an elevated sweat chloride number but not very often. And if your doctor had any indication that something else was causing it, he/she probably would have been very careful with the wording chosen and not said she has CF.

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.

Best wishes - keep posting and please let us know what happens with your other daughter.
 
A

Alyssa

New member
Welcome to the site. Sorry for the diagnosis.

Like Heather said there are a few very rare instances when something else could cause an elevated sweat chloride number but not very often. And if your doctor had any indication that something else was causing it, he/she probably would have been very careful with the wording chosen and not said she has CF.

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.

Best wishes - keep posting and please let us know what happens with your other daughter.
 
M

MamaKass

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.



Best wishes - keep posting and please let us know what happens with your other daughter.</end quote></div>

Actually, her Dr. is in San Antonio and we just moved to Austin so we are working on getting Dr's and medicaid changed. She really isnt having a problem with her wait, she just isnt growing like she should be.

Now that she has been diagnosed, what will happen next?
 
M

MamaKass

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.



Best wishes - keep posting and please let us know what happens with your other daughter.</end quote></div>

Actually, her Dr. is in San Antonio and we just moved to Austin so we are working on getting Dr's and medicaid changed. She really isnt having a problem with her wait, she just isnt growing like she should be.

Now that she has been diagnosed, what will happen next?
 
M

MamaKass

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.



Best wishes - keep posting and please let us know what happens with your other daughter.</end quote></div>

Actually, her Dr. is in San Antonio and we just moved to Austin so we are working on getting Dr's and medicaid changed. She really isnt having a problem with her wait, she just isnt growing like she should be.

Now that she has been diagnosed, what will happen next?
 
M

MamaKass

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.



Best wishes - keep posting and please let us know what happens with your other daughter.</end quote>

Actually, her Dr. is in San Antonio and we just moved to Austin so we are working on getting Dr's and medicaid changed. She really isnt having a problem with her wait, she just isnt growing like she should be.

Now that she has been diagnosed, what will happen next?
 
M

MamaKass

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Alyssa</b></i>

I know everything probably seems very overwhelming right now. Hang in there, once you've had time to absorb the information it gets a little easier. Also I'm assuming they have started your daughter on enzymes -- so she will start absorbing the nutrients better and she should start putting on some weight.



Best wishes - keep posting and please let us know what happens with your other daughter.</end quote>

Actually, her Dr. is in San Antonio and we just moved to Austin so we are working on getting Dr's and medicaid changed. She really isnt having a problem with her wait, she just isnt growing like she should be.

Now that she has been diagnosed, what will happen next?
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamaKass</b></i>


Now that she has been diagnosed, what will happen next?</end quote></div>

Once diagnosed, you'll need to take her to an accredited CF center where you will have a marathon long day meeting with pretty much everybody: plumonologist, GI, CF nurse, geneticist, social worker, nutritionist, etc..... It is a loooonnnnggg overwhelming day. Take a notebook, lots of notes, and get all the numbers so you can call back and ask the questions you'll be sure to forget to ask. Your center will probably want to see her at least 4 times a year, and more if she isn't growing as well as she should be.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamaKass</b></i>


Now that she has been diagnosed, what will happen next?</end quote></div>

Once diagnosed, you'll need to take her to an accredited CF center where you will have a marathon long day meeting with pretty much everybody: plumonologist, GI, CF nurse, geneticist, social worker, nutritionist, etc..... It is a loooonnnnggg overwhelming day. Take a notebook, lots of notes, and get all the numbers so you can call back and ask the questions you'll be sure to forget to ask. Your center will probably want to see her at least 4 times a year, and more if she isn't growing as well as she should be.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamaKass</b></i>


Now that she has been diagnosed, what will happen next?</end quote></div>

Once diagnosed, you'll need to take her to an accredited CF center where you will have a marathon long day meeting with pretty much everybody: plumonologist, GI, CF nurse, geneticist, social worker, nutritionist, etc..... It is a loooonnnnggg overwhelming day. Take a notebook, lots of notes, and get all the numbers so you can call back and ask the questions you'll be sure to forget to ask. Your center will probably want to see her at least 4 times a year, and more if she isn't growing as well as she should be.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamaKass</b></i>


Now that she has been diagnosed, what will happen next?</end quote>

Once diagnosed, you'll need to take her to an accredited CF center where you will have a marathon long day meeting with pretty much everybody: plumonologist, GI, CF nurse, geneticist, social worker, nutritionist, etc..... It is a loooonnnnggg overwhelming day. Take a notebook, lots of notes, and get all the numbers so you can call back and ask the questions you'll be sure to forget to ask. Your center will probably want to see her at least 4 times a year, and more if she isn't growing as well as she should be.
 
M

Mommafirst

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>MamaKass</b></i>


Now that she has been diagnosed, what will happen next?</end quote>

Once diagnosed, you'll need to take her to an accredited CF center where you will have a marathon long day meeting with pretty much everybody: plumonologist, GI, CF nurse, geneticist, social worker, nutritionist, etc..... It is a loooonnnnggg overwhelming day. Take a notebook, lots of notes, and get all the numbers so you can call back and ask the questions you'll be sure to forget to ask. Your center will probably want to see her at least 4 times a year, and more if she isn't growing as well as she should be.
 
A

Alyssa

New member
Heather pretty much said it all - your first visit is very very long, as you will meet with the entire team, by the time each one of them comes in and does their thing literally hours have gone by. If possible have your husband there (two sets of ears are better than one) and maybe get a babysitter for Cambria so she can stay home -- it will be easier on you during the visit not to have to keep her occupied and happy too. Unless they want to test her too that day - but it seems like that could probably wait until a different day when all you have to deal with would be her test.

That's really wonderful that you are not seeing many symptoms at this time and that you've got an early start on diagnosis. It's possible that your visits will amount to just monitoring her for the next few years. It is quite common not to see any lung issues for a few (and even possibly a lot of) years -- we didn't see any in my son for almost 22 years!

Great picture!
 
A

Alyssa

New member
Heather pretty much said it all - your first visit is very very long, as you will meet with the entire team, by the time each one of them comes in and does their thing literally hours have gone by. If possible have your husband there (two sets of ears are better than one) and maybe get a babysitter for Cambria so she can stay home -- it will be easier on you during the visit not to have to keep her occupied and happy too. Unless they want to test her too that day - but it seems like that could probably wait until a different day when all you have to deal with would be her test.

That's really wonderful that you are not seeing many symptoms at this time and that you've got an early start on diagnosis. It's possible that your visits will amount to just monitoring her for the next few years. It is quite common not to see any lung issues for a few (and even possibly a lot of) years -- we didn't see any in my son for almost 22 years!

Great picture!
 
A

Alyssa

New member
Heather pretty much said it all - your first visit is very very long, as you will meet with the entire team, by the time each one of them comes in and does their thing literally hours have gone by. If possible have your husband there (two sets of ears are better than one) and maybe get a babysitter for Cambria so she can stay home -- it will be easier on you during the visit not to have to keep her occupied and happy too. Unless they want to test her too that day - but it seems like that could probably wait until a different day when all you have to deal with would be her test.

That's really wonderful that you are not seeing many symptoms at this time and that you've got an early start on diagnosis. It's possible that your visits will amount to just monitoring her for the next few years. It is quite common not to see any lung issues for a few (and even possibly a lot of) years -- we didn't see any in my son for almost 22 years!

Great picture!
 
A

Alyssa

New member
Heather pretty much said it all - your first visit is very very long, as you will meet with the entire team, by the time each one of them comes in and does their thing literally hours have gone by. If possible have your husband there (two sets of ears are better than one) and maybe get a babysitter for Cambria so she can stay home -- it will be easier on you during the visit not to have to keep her occupied and happy too. Unless they want to test her too that day - but it seems like that could probably wait until a different day when all you have to deal with would be her test.

That's really wonderful that you are not seeing many symptoms at this time and that you've got an early start on diagnosis. It's possible that your visits will amount to just monitoring her for the next few years. It is quite common not to see any lung issues for a few (and even possibly a lot of) years -- we didn't see any in my son for almost 22 years!

Great picture!
 
A

Alyssa

New member
Heather pretty much said it all - your first visit is very very long, as you will meet with the entire team, by the time each one of them comes in and does their thing literally hours have gone by. If possible have your husband there (two sets of ears are better than one) and maybe get a babysitter for Cambria so she can stay home -- it will be easier on you during the visit not to have to keep her occupied and happy too. Unless they want to test her too that day - but it seems like that could probably wait until a different day when all you have to deal with would be her test.

That's really wonderful that you are not seeing many symptoms at this time and that you've got an early start on diagnosis. It's possible that your visits will amount to just monitoring her for the next few years. It is quite common not to see any lung issues for a few (and even possibly a lot of) years -- we didn't see any in my son for almost 22 years!

Great picture!
 
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