could it be?

CJsmom

New member
hello all, I'm new here and have some questions.
My son is 13 and his doc wants him to have CF testing done.
A bit of history...he has had asthma since he was 2 and pneumonia to the point of hospitalization 3 times. He also has malabsorbtion issues and an endoscopy showed that he doesn't digest food properly. He has had severe constipation issues for many years, to the point where he recently had an appendicostomy done. He weighs 90 lbs and has been between 90-100lbs for the past 2 years, even with a fantastic appetite. He just doesn't gain weight. He often takes naps and gets worn out easily. He often has a 'choking' feeling when he coughs. Does this sound like CF? My sons uncle has CF, but has not had a bad time with it, he leads a relatively normal life.
As bad as it may sound, I'm almost hoping it is CF just so we finally have an answer and a name and reason to all the 'whys' we have had the past years.
Thanks so much, I'm glad to have found this forum
 

CJsmom

New member
hello all, I'm new here and have some questions.
My son is 13 and his doc wants him to have CF testing done.
A bit of history...he has had asthma since he was 2 and pneumonia to the point of hospitalization 3 times. He also has malabsorbtion issues and an endoscopy showed that he doesn't digest food properly. He has had severe constipation issues for many years, to the point where he recently had an appendicostomy done. He weighs 90 lbs and has been between 90-100lbs for the past 2 years, even with a fantastic appetite. He just doesn't gain weight. He often takes naps and gets worn out easily. He often has a 'choking' feeling when he coughs. Does this sound like CF? My sons uncle has CF, but has not had a bad time with it, he leads a relatively normal life.
As bad as it may sound, I'm almost hoping it is CF just so we finally have an answer and a name and reason to all the 'whys' we have had the past years.
Thanks so much, I'm glad to have found this forum
 

CJsmom

New member
hello all, I'm new here and have some questions.
My son is 13 and his doc wants him to have CF testing done.
A bit of history...he has had asthma since he was 2 and pneumonia to the point of hospitalization 3 times. He also has malabsorbtion issues and an endoscopy showed that he doesn't digest food properly. He has had severe constipation issues for many years, to the point where he recently had an appendicostomy done. He weighs 90 lbs and has been between 90-100lbs for the past 2 years, even with a fantastic appetite. He just doesn't gain weight. He often takes naps and gets worn out easily. He often has a 'choking' feeling when he coughs. Does this sound like CF? My sons uncle has CF, but has not had a bad time with it, he leads a relatively normal life.
As bad as it may sound, I'm almost hoping it is CF just so we finally have an answer and a name and reason to all the 'whys' we have had the past years.
Thanks so much, I'm glad to have found this forum
 

CJsmom

New member
hello all, I'm new here and have some questions.
My son is 13 and his doc wants him to have CF testing done.
A bit of history...he has had asthma since he was 2 and pneumonia to the point of hospitalization 3 times. He also has malabsorbtion issues and an endoscopy showed that he doesn't digest food properly. He has had severe constipation issues for many years, to the point where he recently had an appendicostomy done. He weighs 90 lbs and has been between 90-100lbs for the past 2 years, even with a fantastic appetite. He just doesn't gain weight. He often takes naps and gets worn out easily. He often has a 'choking' feeling when he coughs. Does this sound like CF? My sons uncle has CF, but has not had a bad time with it, he leads a relatively normal life.
As bad as it may sound, I'm almost hoping it is CF just so we finally have an answer and a name and reason to all the 'whys' we have had the past years.
Thanks so much, I'm glad to have found this forum
 

CJsmom

New member
hello all, I'm new here and have some questions.
<br />My son is 13 and his doc wants him to have CF testing done.
<br />A bit of history...he has had asthma since he was 2 and pneumonia to the point of hospitalization 3 times. He also has malabsorbtion issues and an endoscopy showed that he doesn't digest food properly. He has had severe constipation issues for many years, to the point where he recently had an appendicostomy done. He weighs 90 lbs and has been between 90-100lbs for the past 2 years, even with a fantastic appetite. He just doesn't gain weight. He often takes naps and gets worn out easily. He often has a 'choking' feeling when he coughs. Does this sound like CF? My sons uncle has CF, but has not had a bad time with it, he leads a relatively normal life.
<br />As bad as it may sound, I'm almost hoping it is CF just so we finally have an answer and a name and reason to all the 'whys' we have had the past years.
<br />Thanks so much, I'm glad to have found this forum
 

JazzysMom

New member
I would be totally surprised if it was NOT CF! Especially with a family history & all the symptoms you describe.

I am annoyed it has taken this long to start testing. You really cant go by one person even if they are in the same family. We have siblings with the same mutations, treatments, environment etc, but their clinical outcomes are completely different.

You might want to find out your Uncles mutation & make sure that is included in your sons testing.

Please keep us updated!
 

JazzysMom

New member
I would be totally surprised if it was NOT CF! Especially with a family history & all the symptoms you describe.

I am annoyed it has taken this long to start testing. You really cant go by one person even if they are in the same family. We have siblings with the same mutations, treatments, environment etc, but their clinical outcomes are completely different.

You might want to find out your Uncles mutation & make sure that is included in your sons testing.

Please keep us updated!
 

JazzysMom

New member
I would be totally surprised if it was NOT CF! Especially with a family history & all the symptoms you describe.

I am annoyed it has taken this long to start testing. You really cant go by one person even if they are in the same family. We have siblings with the same mutations, treatments, environment etc, but their clinical outcomes are completely different.

You might want to find out your Uncles mutation & make sure that is included in your sons testing.

Please keep us updated!
 

JazzysMom

New member
I would be totally surprised if it was NOT CF! Especially with a family history & all the symptoms you describe.

I am annoyed it has taken this long to start testing. You really cant go by one person even if they are in the same family. We have siblings with the same mutations, treatments, environment etc, but their clinical outcomes are completely different.

You might want to find out your Uncles mutation & make sure that is included in your sons testing.

Please keep us updated!
 

JazzysMom

New member
I would be totally surprised if it was NOT CF! Especially with a family history & all the symptoms you describe.
<br />
<br />I am annoyed it has taken this long to start testing. You really cant go by one person even if they are in the same family. We have siblings with the same mutations, treatments, environment etc, but their clinical outcomes are completely different.
<br />
<br />You might want to find out your Uncles mutation & make sure that is included in your sons testing.
<br />
<br />Please keep us updated!
 

pjspiegle

New member
Hi,
I certainly understand wanting an answer to the whys. Be cautioned that with CF often comes a lot of whys and unanswerable questions as far as there is no rhymn or reason why one CFer responds one way and another a different way. Though I understand needing an answer and have had times where the worse case senerio was better than not knowing.

It is possible that he does have CF. I would certainly do the testing if I were in your shoes. If they do the genetic testing you will want to ask for the complete Ambrey test as it is the most comprehensive as others will surely tell you here on this site.

Let us know how it turns out. This is a great place for support and understanding. It is great to have a place to ask questions and talk about the disease and know that there are others who understand the questions and language.

LOL

Patty
 

pjspiegle

New member
Hi,
I certainly understand wanting an answer to the whys. Be cautioned that with CF often comes a lot of whys and unanswerable questions as far as there is no rhymn or reason why one CFer responds one way and another a different way. Though I understand needing an answer and have had times where the worse case senerio was better than not knowing.

It is possible that he does have CF. I would certainly do the testing if I were in your shoes. If they do the genetic testing you will want to ask for the complete Ambrey test as it is the most comprehensive as others will surely tell you here on this site.

Let us know how it turns out. This is a great place for support and understanding. It is great to have a place to ask questions and talk about the disease and know that there are others who understand the questions and language.

LOL

Patty
 

pjspiegle

New member
Hi,
I certainly understand wanting an answer to the whys. Be cautioned that with CF often comes a lot of whys and unanswerable questions as far as there is no rhymn or reason why one CFer responds one way and another a different way. Though I understand needing an answer and have had times where the worse case senerio was better than not knowing.

It is possible that he does have CF. I would certainly do the testing if I were in your shoes. If they do the genetic testing you will want to ask for the complete Ambrey test as it is the most comprehensive as others will surely tell you here on this site.

Let us know how it turns out. This is a great place for support and understanding. It is great to have a place to ask questions and talk about the disease and know that there are others who understand the questions and language.

LOL

Patty
 

pjspiegle

New member
Hi,
I certainly understand wanting an answer to the whys. Be cautioned that with CF often comes a lot of whys and unanswerable questions as far as there is no rhymn or reason why one CFer responds one way and another a different way. Though I understand needing an answer and have had times where the worse case senerio was better than not knowing.

It is possible that he does have CF. I would certainly do the testing if I were in your shoes. If they do the genetic testing you will want to ask for the complete Ambrey test as it is the most comprehensive as others will surely tell you here on this site.

Let us know how it turns out. This is a great place for support and understanding. It is great to have a place to ask questions and talk about the disease and know that there are others who understand the questions and language.

LOL

Patty
 

pjspiegle

New member
Hi,
<br />I certainly understand wanting an answer to the whys. Be cautioned that with CF often comes a lot of whys and unanswerable questions as far as there is no rhymn or reason why one CFer responds one way and another a different way. Though I understand needing an answer and have had times where the worse case senerio was better than not knowing.
<br />
<br />It is possible that he does have CF. I would certainly do the testing if I were in your shoes. If they do the genetic testing you will want to ask for the complete Ambrey test as it is the most comprehensive as others will surely tell you here on this site.
<br />
<br />Let us know how it turns out. This is a great place for support and understanding. It is great to have a place to ask questions and talk about the disease and know that there are others who understand the questions and language.
<br />
<br />LOL
<br />
<br />Patty
<br />
<br />
 
C

Cherylwithone

Guest
I would have him tested. My daughter has along history of severe constipation. She also has a appendicostomy. The CF nailed her GI tract first and now in the past few years decided to hit her lungs as well. If you get him tested not only will you have asnwers but alot more questions. Also, then you know what your dealing with.

Like Patty said two people can have CF and not respond the same way. But the fact someone in your family does have CF would want me to push for testing. Good luck! This is a great site for support.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
I would have him tested. My daughter has along history of severe constipation. She also has a appendicostomy. The CF nailed her GI tract first and now in the past few years decided to hit her lungs as well. If you get him tested not only will you have asnwers but alot more questions. Also, then you know what your dealing with.

Like Patty said two people can have CF and not respond the same way. But the fact someone in your family does have CF would want me to push for testing. Good luck! This is a great site for support.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
I would have him tested. My daughter has along history of severe constipation. She also has a appendicostomy. The CF nailed her GI tract first and now in the past few years decided to hit her lungs as well. If you get him tested not only will you have asnwers but alot more questions. Also, then you know what your dealing with.

Like Patty said two people can have CF and not respond the same way. But the fact someone in your family does have CF would want me to push for testing. Good luck! This is a great site for support.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
I would have him tested. My daughter has along history of severe constipation. She also has a appendicostomy. The CF nailed her GI tract first and now in the past few years decided to hit her lungs as well. If you get him tested not only will you have asnwers but alot more questions. Also, then you know what your dealing with.

Like Patty said two people can have CF and not respond the same way. But the fact someone in your family does have CF would want me to push for testing. Good luck! This is a great site for support.

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
I would have him tested. My daughter has along history of severe constipation. She also has a appendicostomy. The CF nailed her GI tract first and now in the past few years decided to hit her lungs as well. If you get him tested not only will you have asnwers but alot more questions. Also, then you know what your dealing with.
<br />
<br />Like Patty said two people can have CF and not respond the same way. But the fact someone in your family does have CF would want me to push for testing. Good luck! This is a great site for support.
<br />
<br />Cheryl mom to Malora 15 w/cf
 
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