Does this sound like CF?

[anonymous]

<i>Jade here.....</i>

If you are divorced, seperated, ect, then it might be posssible to obtain consent from another close relative such as a sibling or grandparent. I'll dig a little and see what I can find out about testing and consent issues<img src="i/expressions/face-icon-small-cool.gif" border="0">.

 

[monkey]

I am the father of a 5 year old CF boy. Let me give you a couple of things to evaluate:

When she sweats, is it salty? I assume that you kiss her goodnight and so forth, have you ever noticed that it's salty? Go do it right now.....smell her hair, even lick her skin...is it salty? To me, that is the dead give away.

Are her stools abnormally soft? Almost like diareah?(sp?). Have you ever noticed that her stools have oil in them? That is another one.

Remember, if she does have CF, she is still EXTRA special and she'll need your love more than ever! As I have posted on here a few times, I am almost glad that my Ryan has CF as weird as that sounds...I love him 100% exactly like he is! If he didn't have CF, he would not be the little dude that I am best, best, best buddies with. I am not sure what he would be like, but he wouldn't be exactly like he is, and that "unknown" is too much for me.

So, if she does have CF....keep your chin up and fight it!

Dan
Father of Megan, 9 no CF and Ryan "the Monkey", 5 with CF.

 

[monkey]

I am the father of a 5 year old CF boy. Let me give you a couple of things to evaluate:

When she sweats, is it salty? I assume that you kiss her goodnight and so forth, have you ever noticed that it's salty? Go do it right now.....smell her hair, even lick her skin...is it salty? To me, that is the dead give away.

Are her stools abnormally soft? Almost like diareah?(sp?). Have you ever noticed that her stools have oil in them? That is another one.

Remember, if she does have CF, she is still EXTRA special and she'll need your love more than ever! As I have posted on here a few times, I am almost glad that my Ryan has CF as weird as that sounds...I love him 100% exactly like he is! If he didn't have CF, he would not be the little dude that I am best, best, best buddies with. I am not sure what he would be like, but he wouldn't be exactly like he is, and that "unknown" is too much for me.

So, if she does have CF....keep your chin up and fight it!

Dan
Father of Megan, 9 no CF and Ryan "the Monkey", 5 with CF.

 

[monkey]

I am the father of a 5 year old CF boy. Let me give you a couple of things to evaluate:

When she sweats, is it salty? I assume that you kiss her goodnight and so forth, have you ever noticed that it's salty? Go do it right now.....smell her hair, even lick her skin...is it salty? To me, that is the dead give away.

Are her stools abnormally soft? Almost like diareah?(sp?). Have you ever noticed that her stools have oil in them? That is another one.

Remember, if she does have CF, she is still EXTRA special and she'll need your love more than ever! As I have posted on here a few times, I am almost glad that my Ryan has CF as weird as that sounds...I love him 100% exactly like he is! If he didn't have CF, he would not be the little dude that I am best, best, best buddies with. I am not sure what he would be like, but he wouldn't be exactly like he is, and that "unknown" is too much for me.

So, if she does have CF....keep your chin up and fight it!

Dan
Father of Megan, 9 no CF and Ryan "the Monkey", 5 with CF.

 

[Fruity]

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci

 

[Fruity]

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci

 

[Fruity]

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci

 

[anonymous]

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

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci</end quote></div>


great story as to why sweat testing isn't the best option! thanks for sharing ceci

 

[anonymous]

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

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci</end quote></div>


great story as to why sweat testing isn't the best option! thanks for sharing ceci

 

[anonymous]

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

Hi there. My name is Ceci, and I was diagnosed at age 14. I was never sweaty tasting, and never had trouble gaining weight. I was pretty much normal except I would get lung infections. They tried to do a sweat test on me, when I was 5, and I was negative. They diagnosed with me asthma and producutive cough. I stayed with that diagnosis until I was 13 and started getting infections I couldn't clear. It took a year to finally get a doctor to say "has she been tested for CF?" and get the gene test. Go for the genetic test. It's on your daughters blood, not your's and your husbands. Unless there is a legal document that says you can't have any procedure or test on your daughter without your husbands consent, there shouldn't be any issue.

I wish you luck, and if you'd like to hear more about my story, just let me know.

Be well, and I hope you find answers and comfort.

Ceci</end quote></div>


great story as to why sweat testing isn't the best option! thanks for sharing ceci

 

[dyza]

sounds like you have read up on the 'classic' signs of CF. but not everybody will show these signs.
Our son had 2 sweat tests done ,both negative, he is pancreatic sufficient, and has never really had a productive cough. Yet he still has CF.
Push for the genetic test, dont know the situation, but would you really need her fathers permission, and if you do, why wont he give it? does he not care for his daughters health, the quicker you find out the sooner she can get treated, if it is CF

 

[dyza]

sounds like you have read up on the 'classic' signs of CF. but not everybody will show these signs.
Our son had 2 sweat tests done ,both negative, he is pancreatic sufficient, and has never really had a productive cough. Yet he still has CF.
Push for the genetic test, dont know the situation, but would you really need her fathers permission, and if you do, why wont he give it? does he not care for his daughters health, the quicker you find out the sooner she can get treated, if it is CF

 

[dyza]

sounds like you have read up on the 'classic' signs of CF. but not everybody will show these signs.
Our son had 2 sweat tests done ,both negative, he is pancreatic sufficient, and has never really had a productive cough. Yet he still has CF.
Push for the genetic test, dont know the situation, but would you really need her fathers permission, and if you do, why wont he give it? does he not care for his daughters health, the quicker you find out the sooner she can get treated, if it is CF

 

[anonymous]

Sorry about the confusion, I dont know anything about genetic testing so I thought they used the parents blood, but i realize now that they do not so he will not have to consent. I am going to ask for a gene test asap and hopefully get to the bottom of it. I have done a lot of the research and she does have all of the "classic" signs so it does worry me but we will have to see and pray!!

 

[anonymous]

Sorry about the confusion, I dont know anything about genetic testing so I thought they used the parents blood, but i realize now that they do not so he will not have to consent. I am going to ask for a gene test asap and hopefully get to the bottom of it. I have done a lot of the research and she does have all of the "classic" signs so it does worry me but we will have to see and pray!!

 

[anonymous]

Sorry about the confusion, I dont know anything about genetic testing so I thought they used the parents blood, but i realize now that they do not so he will not have to consent. I am going to ask for a gene test asap and hopefully get to the bottom of it. I have done a lot of the research and she does have all of the "classic" signs so it does worry me but we will have to see and pray!!

 

[mom4holly]

Thank you to everyone for your help. I have spoken to my dr and they are going to complete a gene test but for the mean time they have chosen to start her on an antibiotic cycle and some more breathing meds.

 

[mom4holly]

Thank you to everyone for your help. I have spoken to my dr and they are going to complete a gene test but for the mean time they have chosen to start her on an antibiotic cycle and some more breathing meds.

 

[mom4holly]

Thank you to everyone for your help. I have spoken to my dr and they are going to complete a gene test but for the mean time they have chosen to start her on an antibiotic cycle and some more breathing meds.

 

[bmombtoo]

Hi,
My son made it to <span class="FTHighlightFont">age 12 </span ft>without being diagnosed. We just got our <span class="FTHighlightFont">official "it's CF" in September</span ft>. He has had prolbems with asthma and sinus infections all of his life. He too vomits muscus.

As far as genetic testing goes they did it my drawing blood from Josh. However they were <span class="FTHighlightFont">unable to identify a single gene mutation.</span ft> He still has CF, the gene has not been identified yet and his doctor states she knows of about 10 families across the US where this is the case.

Additionally he <span class="FTHighlightFont">sweat test results varied from questionasble to no cf. </span ft>However the doctors did a test called a <span class="FTHighlightFont">nasal differential potential</span ft>, recognized as a test for CF, and <span class="FTHighlightFont">that was positive</span ft>. There is also a "special sweat test" that is different form the routine one and that one was positive for CF.

We are African American and because of ethnic background, the presentation of CF is somewhat different and not as frequent.