Question for Parents Diagnosed with CF after having a Child with CF

M

MargaritaChic

New member
I know there is at least one mother on this board that was diagnosed with CF after she had a child who was diagnosed with CF.

I need some advice on how to ask my doctor to test me for CF (full panel). I am going to see my Primary physician on July 24 and I want to ask him but I fear he is going to think I am nuts or just blow me off. So any advice/studies/stories would be helpful.


Here is my story:
I have had bowel issues for about 13 or so years. I had watery diareeha EVERY DAY (every time I went to the bathroom) for many of those years. Frequent diarreah. On a bad day, I would have watery stools ten times a day. After eatting I have to go within 15-30 minutes after eating. I was diagnosed with Crohn's Disease by a clinical diagnosis. None of the barium test I was given showed any signs of Crohn's, but the DR thought if it looks like a duck then it must be a duck... so he diagnosed probable Crohn's.

I have gotten used to the bowel issues. I know that if I give up foods that are high in fat or highly processed that I do alot better.


But now I have a new issue. I have been coughing daily since early May. I have been to the doctor (not my regular one - one of his coworkers) and he thinks I have asthma. He gave me an inhaler. At first I thought it seemed to help ... but then I started having trouble breathing. If I tried to breathe deeply it would start me coughing. When I talk I sound faint and out of breath. So I went back to that doctor (my DR is on vacation). This doctor says he still believes I have asthma. He put me on 10 days of Prednisone (steroid) and an antibiotic (just in case). He told me if this does not help then I should see a Pulmunologist.

I think I should still see a Pulmonologist and I also think I should be test for CF.

Any suggestions/help/comments from anyone is appreciated.
 
M

MargaritaChic

New member
I know there is at least one mother on this board that was diagnosed with CF after she had a child who was diagnosed with CF.

I need some advice on how to ask my doctor to test me for CF (full panel). I am going to see my Primary physician on July 24 and I want to ask him but I fear he is going to think I am nuts or just blow me off. So any advice/studies/stories would be helpful.


Here is my story:
I have had bowel issues for about 13 or so years. I had watery diareeha EVERY DAY (every time I went to the bathroom) for many of those years. Frequent diarreah. On a bad day, I would have watery stools ten times a day. After eatting I have to go within 15-30 minutes after eating. I was diagnosed with Crohn's Disease by a clinical diagnosis. None of the barium test I was given showed any signs of Crohn's, but the DR thought if it looks like a duck then it must be a duck... so he diagnosed probable Crohn's.

I have gotten used to the bowel issues. I know that if I give up foods that are high in fat or highly processed that I do alot better.


But now I have a new issue. I have been coughing daily since early May. I have been to the doctor (not my regular one - one of his coworkers) and he thinks I have asthma. He gave me an inhaler. At first I thought it seemed to help ... but then I started having trouble breathing. If I tried to breathe deeply it would start me coughing. When I talk I sound faint and out of breath. So I went back to that doctor (my DR is on vacation). This doctor says he still believes I have asthma. He put me on 10 days of Prednisone (steroid) and an antibiotic (just in case). He told me if this does not help then I should see a Pulmunologist.

I think I should still see a Pulmonologist and I also think I should be test for CF.

Any suggestions/help/comments from anyone is appreciated.
 
M

MargaritaChic

New member
I know there is at least one mother on this board that was diagnosed with CF after she had a child who was diagnosed with CF.

I need some advice on how to ask my doctor to test me for CF (full panel). I am going to see my Primary physician on July 24 and I want to ask him but I fear he is going to think I am nuts or just blow me off. So any advice/studies/stories would be helpful.


Here is my story:
I have had bowel issues for about 13 or so years. I had watery diareeha EVERY DAY (every time I went to the bathroom) for many of those years. Frequent diarreah. On a bad day, I would have watery stools ten times a day. After eatting I have to go within 15-30 minutes after eating. I was diagnosed with Crohn's Disease by a clinical diagnosis. None of the barium test I was given showed any signs of Crohn's, but the DR thought if it looks like a duck then it must be a duck... so he diagnosed probable Crohn's.

I have gotten used to the bowel issues. I know that if I give up foods that are high in fat or highly processed that I do alot better.


But now I have a new issue. I have been coughing daily since early May. I have been to the doctor (not my regular one - one of his coworkers) and he thinks I have asthma. He gave me an inhaler. At first I thought it seemed to help ... but then I started having trouble breathing. If I tried to breathe deeply it would start me coughing. When I talk I sound faint and out of breath. So I went back to that doctor (my DR is on vacation). This doctor says he still believes I have asthma. He put me on 10 days of Prednisone (steroid) and an antibiotic (just in case). He told me if this does not help then I should see a Pulmunologist.

I think I should still see a Pulmonologist and I also think I should be test for CF.

Any suggestions/help/comments from anyone is appreciated.
 
M

MargaritaChic

New member
I know there is at least one mother on this board that was diagnosed with CF after she had a child who was diagnosed with CF.

I need some advice on how to ask my doctor to test me for CF (full panel). I am going to see my Primary physician on July 24 and I want to ask him but I fear he is going to think I am nuts or just blow me off. So any advice/studies/stories would be helpful.


Here is my story:
I have had bowel issues for about 13 or so years. I had watery diareeha EVERY DAY (every time I went to the bathroom) for many of those years. Frequent diarreah. On a bad day, I would have watery stools ten times a day. After eatting I have to go within 15-30 minutes after eating. I was diagnosed with Crohn's Disease by a clinical diagnosis. None of the barium test I was given showed any signs of Crohn's, but the DR thought if it looks like a duck then it must be a duck... so he diagnosed probable Crohn's.

I have gotten used to the bowel issues. I know that if I give up foods that are high in fat or highly processed that I do alot better.


But now I have a new issue. I have been coughing daily since early May. I have been to the doctor (not my regular one - one of his coworkers) and he thinks I have asthma. He gave me an inhaler. At first I thought it seemed to help ... but then I started having trouble breathing. If I tried to breathe deeply it would start me coughing. When I talk I sound faint and out of breath. So I went back to that doctor (my DR is on vacation). This doctor says he still believes I have asthma. He put me on 10 days of Prednisone (steroid) and an antibiotic (just in case). He told me if this does not help then I should see a Pulmunologist.

I think I should still see a Pulmonologist and I also think I should be test for CF.

Any suggestions/help/comments from anyone is appreciated.
 
M

MargaritaChic

New member
I know there is at least one mother on this board that was diagnosed with CF after she had a child who was diagnosed with CF.
<br />
<br />I need some advice on how to ask my doctor to test me for CF (full panel). I am going to see my Primary physician on July 24 and I want to ask him but I fear he is going to think I am nuts or just blow me off. So any advice/studies/stories would be helpful.
<br />
<br />
<br />Here is my story:
<br />I have had bowel issues for about 13 or so years. I had watery diareeha EVERY DAY (every time I went to the bathroom) for many of those years. Frequent diarreah. On a bad day, I would have watery stools ten times a day. After eatting I have to go within 15-30 minutes after eating. I was diagnosed with Crohn's Disease by a clinical diagnosis. None of the barium test I was given showed any signs of Crohn's, but the DR thought if it looks like a duck then it must be a duck... so he diagnosed probable Crohn's.
<br />
<br />I have gotten used to the bowel issues. I know that if I give up foods that are high in fat or highly processed that I do alot better.
<br />
<br />
<br />But now I have a new issue. I have been coughing daily since early May. I have been to the doctor (not my regular one - one of his coworkers) and he thinks I have asthma. He gave me an inhaler. At first I thought it seemed to help ... but then I started having trouble breathing. If I tried to breathe deeply it would start me coughing. When I talk I sound faint and out of breath. So I went back to that doctor (my DR is on vacation). This doctor says he still believes I have asthma. He put me on 10 days of Prednisone (steroid) and an antibiotic (just in case). He told me if this does not help then I should see a Pulmunologist.
<br />
<br />I think I should still see a Pulmonologist and I also think I should be test for CF.
<br />
<br />Any suggestions/help/comments from anyone is appreciated.
 
M

Mommafirst

Guest
I think it sounds like you have good cause to be tested. Both of your daughter's mutations are in the first two classes, so if you have a second more rare mutation, it is reasonable that you would have had symptoms show up slowly over time. I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea), but it would be good to be checked. I mean you already KNOW you have one Cf mutation.
 
M

Mommafirst

Guest
I think it sounds like you have good cause to be tested. Both of your daughter's mutations are in the first two classes, so if you have a second more rare mutation, it is reasonable that you would have had symptoms show up slowly over time. I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea), but it would be good to be checked. I mean you already KNOW you have one Cf mutation.
 
M

Mommafirst

Guest
I think it sounds like you have good cause to be tested. Both of your daughter's mutations are in the first two classes, so if you have a second more rare mutation, it is reasonable that you would have had symptoms show up slowly over time. I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea), but it would be good to be checked. I mean you already KNOW you have one Cf mutation.
 
M

Mommafirst

Guest
I think it sounds like you have good cause to be tested. Both of your daughter's mutations are in the first two classes, so if you have a second more rare mutation, it is reasonable that you would have had symptoms show up slowly over time. I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea), but it would be good to be checked. I mean you already KNOW you have one Cf mutation.
 
M

Mommafirst

Guest
I think it sounds like you have good cause to be tested. Both of your daughter's mutations are in the first two classes, so if you have a second more rare mutation, it is reasonable that you would have had symptoms show up slowly over time. I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea), but it would be good to be checked. I mean you already KNOW you have one Cf mutation.
 
M

MargaritaChic

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

I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea.</end quote></div>


The dr I saw the last 2 appointments did also bring this up as a possibility.
 
M

MargaritaChic

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

I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea.</end quote></div>


The dr I saw the last 2 appointments did also bring this up as a possibility.
 
M

MargaritaChic

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

I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea.</end quote></div>


The dr I saw the last 2 appointments did also bring this up as a possibility.
 
M

MargaritaChic

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

I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea.</end quote>


The dr I saw the last 2 appointments did also bring this up as a possibility.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
<br />
<br />I suppose its possible that you may have carrier symptoms (though some doctors dispute this idea.</end quote>
<br />
<br />
<br />The dr I saw the last 2 appointments did also bring this up as a possibility.
<br />
<br />
 
K

ktsmom

New member
Wow, Marla, I am so sorry to hear of the problems you are experiencing. I agree that you have strong reasons to see a Pulmonologist and be tested for CF. I have no direct experience or knowledge to offer - just wanted you to know I'm thinking of you and hoping you get answers. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Wow, Marla, I am so sorry to hear of the problems you are experiencing. I agree that you have strong reasons to see a Pulmonologist and be tested for CF. I have no direct experience or knowledge to offer - just wanted you to know I'm thinking of you and hoping you get answers. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Wow, Marla, I am so sorry to hear of the problems you are experiencing. I agree that you have strong reasons to see a Pulmonologist and be tested for CF. I have no direct experience or knowledge to offer - just wanted you to know I'm thinking of you and hoping you get answers. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Wow, Marla, I am so sorry to hear of the problems you are experiencing. I agree that you have strong reasons to see a Pulmonologist and be tested for CF. I have no direct experience or knowledge to offer - just wanted you to know I'm thinking of you and hoping you get answers. <img src="i/expressions/heart.gif" border="0">
 
K

ktsmom

New member
Wow, Marla, I am so sorry to hear of the problems you are experiencing. I agree that you have strong reasons to see a Pulmonologist and be tested for CF. I have no direct experience or knowledge to offer - just wanted you to know I'm thinking of you and hoping you get answers. <img src="i/expressions/heart.gif" border="0">
 
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