15 Month Old going for CF test

[Alyssa]

Ditto to Melissa's post (I do that a lot don't I)

If you get a clear positive on the sweat test that's the easiest thing -- genetic testing can follow after that at some point, just so you know what genes you are dealing with. But if you get anything above 20 I'd push for genetic testing asap because there are so many people on here who have sweat tests clearly in the normal and borderline range but do have two CF genes.

If you have time, read the first post on my blog - it tells the story of sweat test results and how my daughter went 8 years misdiagnosed because she has a normal sweat test number.

It might also help you to ask ahead of time when they will have the results of the sweat test - some places it is a couple of hours, others it is a couple of days. You also want to make sure you are getting the sweat test at a certified CF center -- check the website cff.org for a center near you -- you may already be there.

Best wishes -- please check back with us and let us know what happens.

 

[Alyssa]

Ditto to Melissa's post (I do that a lot don't I)

If you get a clear positive on the sweat test that's the easiest thing -- genetic testing can follow after that at some point, just so you know what genes you are dealing with. But if you get anything above 20 I'd push for genetic testing asap because there are so many people on here who have sweat tests clearly in the normal and borderline range but do have two CF genes.

If you have time, read the first post on my blog - it tells the story of sweat test results and how my daughter went 8 years misdiagnosed because she has a normal sweat test number.

It might also help you to ask ahead of time when they will have the results of the sweat test - some places it is a couple of hours, others it is a couple of days. You also want to make sure you are getting the sweat test at a certified CF center -- check the website cff.org for a center near you -- you may already be there.

Best wishes -- please check back with us and let us know what happens.

 

[Alyssa]

Ditto to Melissa's post (I do that a lot don't I)

If you get a clear positive on the sweat test that's the easiest thing -- genetic testing can follow after that at some point, just so you know what genes you are dealing with. But if you get anything above 20 I'd push for genetic testing asap because there are so many people on here who have sweat tests clearly in the normal and borderline range but do have two CF genes.

If you have time, read the first post on my blog - it tells the story of sweat test results and how my daughter went 8 years misdiagnosed because she has a normal sweat test number.

It might also help you to ask ahead of time when they will have the results of the sweat test - some places it is a couple of hours, others it is a couple of days. You also want to make sure you are getting the sweat test at a certified CF center -- check the website cff.org for a center near you -- you may already be there.

Best wishes -- please check back with us and let us know what happens.

 

[Alyssa]

Ditto to Melissa's post (I do that a lot don't I)

If you get a clear positive on the sweat test that's the easiest thing -- genetic testing can follow after that at some point, just so you know what genes you are dealing with. But if you get anything above 20 I'd push for genetic testing asap because there are so many people on here who have sweat tests clearly in the normal and borderline range but do have two CF genes.

If you have time, read the first post on my blog - it tells the story of sweat test results and how my daughter went 8 years misdiagnosed because she has a normal sweat test number.

It might also help you to ask ahead of time when they will have the results of the sweat test - some places it is a couple of hours, others it is a couple of days. You also want to make sure you are getting the sweat test at a certified CF center -- check the website cff.org for a center near you -- you may already be there.

Best wishes -- please check back with us and let us know what happens.

 

[Alyssa]

Ditto to Melissa's post (I do that a lot don't I)

If you get a clear positive on the sweat test that's the easiest thing -- genetic testing can follow after that at some point, just so you know what genes you are dealing with. But if you get anything above 20 I'd push for genetic testing asap because there are so many people on here who have sweat tests clearly in the normal and borderline range but do have two CF genes.

If you have time, read the first post on my blog - it tells the story of sweat test results and how my daughter went 8 years misdiagnosed because she has a normal sweat test number.

It might also help you to ask ahead of time when they will have the results of the sweat test - some places it is a couple of hours, others it is a couple of days. You also want to make sure you are getting the sweat test at a certified CF center -- check the website cff.org for a center near you -- you may already be there.

Best wishes -- please check back with us and let us know what happens.

 

[angelsmom]

I think it is perfectly normal for you to be worried and scared. My daughter was diagnosed at about 18 months old and I can tell you that when her pediatrican called me, at work, to give me the sweat test results, I broke down in tears and had to leave work for the rest of the day because all I could think about was how much this diagnosis was going to change the course of my daughter's life. I just could not believe what I heard and I was very scared. I immediately called the CF clinic and got her in the next day because I feared what would happen if we waited any longer. I knew nothing about CF and am still learning things about it every day. Reading as much as I can and asking as many questions as I can has helped me come to terms with my daughter's diagnosis and I am very hopeful for her future (well, most of the time I am hopeful! I admit, I do sometimes have days when I am not as hopeful but that probably comes with the territory.)

Anyway, I hope that you feel a little better about being worried and scared. It is just what mothers do. And then they set it aside and do what they have to to help their child.

Thinking of you and worrying with you,

Sandra
Mom to Sara, 3 w/cf

 

[angelsmom]

I think it is perfectly normal for you to be worried and scared. My daughter was diagnosed at about 18 months old and I can tell you that when her pediatrican called me, at work, to give me the sweat test results, I broke down in tears and had to leave work for the rest of the day because all I could think about was how much this diagnosis was going to change the course of my daughter's life. I just could not believe what I heard and I was very scared. I immediately called the CF clinic and got her in the next day because I feared what would happen if we waited any longer. I knew nothing about CF and am still learning things about it every day. Reading as much as I can and asking as many questions as I can has helped me come to terms with my daughter's diagnosis and I am very hopeful for her future (well, most of the time I am hopeful! I admit, I do sometimes have days when I am not as hopeful but that probably comes with the territory.)

Anyway, I hope that you feel a little better about being worried and scared. It is just what mothers do. And then they set it aside and do what they have to to help their child.

Thinking of you and worrying with you,

Sandra
Mom to Sara, 3 w/cf

 

[angelsmom]

I think it is perfectly normal for you to be worried and scared. My daughter was diagnosed at about 18 months old and I can tell you that when her pediatrican called me, at work, to give me the sweat test results, I broke down in tears and had to leave work for the rest of the day because all I could think about was how much this diagnosis was going to change the course of my daughter's life. I just could not believe what I heard and I was very scared. I immediately called the CF clinic and got her in the next day because I feared what would happen if we waited any longer. I knew nothing about CF and am still learning things about it every day. Reading as much as I can and asking as many questions as I can has helped me come to terms with my daughter's diagnosis and I am very hopeful for her future (well, most of the time I am hopeful! I admit, I do sometimes have days when I am not as hopeful but that probably comes with the territory.)

Anyway, I hope that you feel a little better about being worried and scared. It is just what mothers do. And then they set it aside and do what they have to to help their child.

Thinking of you and worrying with you,

Sandra
Mom to Sara, 3 w/cf

 

[angelsmom]

I think it is perfectly normal for you to be worried and scared. My daughter was diagnosed at about 18 months old and I can tell you that when her pediatrican called me, at work, to give me the sweat test results, I broke down in tears and had to leave work for the rest of the day because all I could think about was how much this diagnosis was going to change the course of my daughter's life. I just could not believe what I heard and I was very scared. I immediately called the CF clinic and got her in the next day because I feared what would happen if we waited any longer. I knew nothing about CF and am still learning things about it every day. Reading as much as I can and asking as many questions as I can has helped me come to terms with my daughter's diagnosis and I am very hopeful for her future (well, most of the time I am hopeful! I admit, I do sometimes have days when I am not as hopeful but that probably comes with the territory.)

Anyway, I hope that you feel a little better about being worried and scared. It is just what mothers do. And then they set it aside and do what they have to to help their child.

Thinking of you and worrying with you,

Sandra
Mom to Sara, 3 w/cf

 

[angelsmom]

I think it is perfectly normal for you to be worried and scared. My daughter was diagnosed at about 18 months old and I can tell you that when her pediatrican called me, at work, to give me the sweat test results, I broke down in tears and had to leave work for the rest of the day because all I could think about was how much this diagnosis was going to change the course of my daughter's life. I just could not believe what I heard and I was very scared. I immediately called the CF clinic and got her in the next day because I feared what would happen if we waited any longer. I knew nothing about CF and am still learning things about it every day. Reading as much as I can and asking as many questions as I can has helped me come to terms with my daughter's diagnosis and I am very hopeful for her future (well, most of the time I am hopeful! I admit, I do sometimes have days when I am not as hopeful but that probably comes with the territory.)

Anyway, I hope that you feel a little better about being worried and scared. It is just what mothers do. And then they set it aside and do what they have to to help their child.

Thinking of you and worrying with you,

Sandra
Mom to Sara, 3 w/cf

 

[ange75]

Thank you all for your replies. I definitely am all over the place right now with my emotions. I'm scared that with a CF diagnosis for my son that I will be depressed all the time worried about his life and all I want is for him to have a happy, normal life. Also, my mother just died very suddenly a few weeks ago and she was only 57 so having this on top of that is just almost too much. Ugh! Anyways, I feel for all of you who have already gone through this and battle it everyday. I'm also amazed at how many people know NOTHING about CF.

I do havea couple of questions.....I see the median age expectancy for someone with CF is 37. Is that really a true average? Do MOST people live that long, do most people expect that or do you live in fear that it will be much sooner.

Also, were your children really obvious malabsorption issues? My doctor says the test could be wrong so we are actually redoing the stool test to double check if there is still fat in his stool. I mean my son is growing...he is taller...but his weigh is just barely inching up. Does that sound typical? I keep trying tell myself we would have more obvious signs.

This is so darn scary.

Thanks again!!!!

 

[ange75]

Thank you all for your replies. I definitely am all over the place right now with my emotions. I'm scared that with a CF diagnosis for my son that I will be depressed all the time worried about his life and all I want is for him to have a happy, normal life. Also, my mother just died very suddenly a few weeks ago and she was only 57 so having this on top of that is just almost too much. Ugh! Anyways, I feel for all of you who have already gone through this and battle it everyday. I'm also amazed at how many people know NOTHING about CF.

I do havea couple of questions.....I see the median age expectancy for someone with CF is 37. Is that really a true average? Do MOST people live that long, do most people expect that or do you live in fear that it will be much sooner.

Also, were your children really obvious malabsorption issues? My doctor says the test could be wrong so we are actually redoing the stool test to double check if there is still fat in his stool. I mean my son is growing...he is taller...but his weigh is just barely inching up. Does that sound typical? I keep trying tell myself we would have more obvious signs.

This is so darn scary.

Thanks again!!!!

 

[ange75]

Thank you all for your replies. I definitely am all over the place right now with my emotions. I'm scared that with a CF diagnosis for my son that I will be depressed all the time worried about his life and all I want is for him to have a happy, normal life. Also, my mother just died very suddenly a few weeks ago and she was only 57 so having this on top of that is just almost too much. Ugh! Anyways, I feel for all of you who have already gone through this and battle it everyday. I'm also amazed at how many people know NOTHING about CF.

I do havea couple of questions.....I see the median age expectancy for someone with CF is 37. Is that really a true average? Do MOST people live that long, do most people expect that or do you live in fear that it will be much sooner.

Also, were your children really obvious malabsorption issues? My doctor says the test could be wrong so we are actually redoing the stool test to double check if there is still fat in his stool. I mean my son is growing...he is taller...but his weigh is just barely inching up. Does that sound typical? I keep trying tell myself we would have more obvious signs.

This is so darn scary.

Thanks again!!!!

 

[ange75]

Thank you all for your replies. I definitely am all over the place right now with my emotions. I'm scared that with a CF diagnosis for my son that I will be depressed all the time worried about his life and all I want is for him to have a happy, normal life. Also, my mother just died very suddenly a few weeks ago and she was only 57 so having this on top of that is just almost too much. Ugh! Anyways, I feel for all of you who have already gone through this and battle it everyday. I'm also amazed at how many people know NOTHING about CF.

I do havea couple of questions.....I see the median age expectancy for someone with CF is 37. Is that really a true average? Do MOST people live that long, do most people expect that or do you live in fear that it will be much sooner.

Also, were your children really obvious malabsorption issues? My doctor says the test could be wrong so we are actually redoing the stool test to double check if there is still fat in his stool. I mean my son is growing...he is taller...but his weigh is just barely inching up. Does that sound typical? I keep trying tell myself we would have more obvious signs.

This is so darn scary.

Thanks again!!!!

 

[ange75]

Thank you all for your replies. I definitely am all over the place right now with my emotions. I'm scared that with a CF diagnosis for my son that I will be depressed all the time worried about his life and all I want is for him to have a happy, normal life. Also, my mother just died very suddenly a few weeks ago and she was only 57 so having this on top of that is just almost too much. Ugh! Anyways, I feel for all of you who have already gone through this and battle it everyday. I'm also amazed at how many people know NOTHING about CF.

I do havea couple of questions.....I see the median age expectancy for someone with CF is 37. Is that really a true average? Do MOST people live that long, do most people expect that or do you live in fear that it will be much sooner.

Also, were your children really obvious malabsorption issues? My doctor says the test could be wrong so we are actually redoing the stool test to double check if there is still fat in his stool. I mean my son is growing...he is taller...but his weigh is just barely inching up. Does that sound typical? I keep trying tell myself we would have more obvious signs.

This is so darn scary.

Thanks again!!!!

 

[Alyssa]

Don't hang your hat on too many "obvious signs" CF is very different with each person - yes, there are a lot of the same things that many people experience but we are all learning (doctors included) that people do no present all of the same symptoms at the same time. The best thing is to get confirmation with either high sweat test and/or genetic testing. Then you deal with what symptoms you have regardless of whether or not they fit the mold perfectly. Does that make sense?

Also -- DO NOT and I repeat do not get hung up on the CFF's MEDIAN age number of 37 years old. It's a statistical number -- median number is the key word there - not average. So at first glance it can look more scary than it is. And yes, many many people live longer than 37. I know of several in their 50's & 60's .... even one who just turned 76 !

 

[Alyssa]

Don't hang your hat on too many "obvious signs" CF is very different with each person - yes, there are a lot of the same things that many people experience but we are all learning (doctors included) that people do no present all of the same symptoms at the same time. The best thing is to get confirmation with either high sweat test and/or genetic testing. Then you deal with what symptoms you have regardless of whether or not they fit the mold perfectly. Does that make sense?

Also -- DO NOT and I repeat do not get hung up on the CFF's MEDIAN age number of 37 years old. It's a statistical number -- median number is the key word there - not average. So at first glance it can look more scary than it is. And yes, many many people live longer than 37. I know of several in their 50's & 60's .... even one who just turned 76 !

 

[Alyssa]

Don't hang your hat on too many "obvious signs" CF is very different with each person - yes, there are a lot of the same things that many people experience but we are all learning (doctors included) that people do no present all of the same symptoms at the same time. The best thing is to get confirmation with either high sweat test and/or genetic testing. Then you deal with what symptoms you have regardless of whether or not they fit the mold perfectly. Does that make sense?

Also -- DO NOT and I repeat do not get hung up on the CFF's MEDIAN age number of 37 years old. It's a statistical number -- median number is the key word there - not average. So at first glance it can look more scary than it is. And yes, many many people live longer than 37. I know of several in their 50's & 60's .... even one who just turned 76 !

 

[Alyssa]

Don't hang your hat on too many "obvious signs" CF is very different with each person - yes, there are a lot of the same things that many people experience but we are all learning (doctors included) that people do no present all of the same symptoms at the same time. The best thing is to get confirmation with either high sweat test and/or genetic testing. Then you deal with what symptoms you have regardless of whether or not they fit the mold perfectly. Does that make sense?

Also -- DO NOT and I repeat do not get hung up on the CFF's MEDIAN age number of 37 years old. It's a statistical number -- median number is the key word there - not average. So at first glance it can look more scary than it is. And yes, many many people live longer than 37. I know of several in their 50's & 60's .... even one who just turned 76 !

 

[Alyssa]

Don't hang your hat on too many "obvious signs" CF is very different with each person - yes, there are a lot of the same things that many people experience but we are all learning (doctors included) that people do no present all of the same symptoms at the same time. The best thing is to get confirmation with either high sweat test and/or genetic testing. Then you deal with what symptoms you have regardless of whether or not they fit the mold perfectly. Does that make sense?

Also -- DO NOT and I repeat do not get hung up on the CFF's MEDIAN age number of 37 years old. It's a statistical number -- median number is the key word there - not average. So at first glance it can look more scary than it is. And yes, many many people live longer than 37. I know of several in their 50's & 60's .... even one who just turned 76 !