Two borderline sweat chloride tests

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Mistyjo

New member
I have posted this a few times so sorry if you are reading it again. 
My 5 yr old had two borderline sweat chloride test and our ped wants her to be seen by a CF specialist and have genetic testing done.  The only symptoms she has is chronic constipation and failure to thrive.  She has had some respiratory infections but probably no more than most kids.  She has had croup several times. 
Has anyone had a similar experience and it turned out to be CF or not CF?  Thanks for any advice. 
 
M

Mistyjo

New member
I have posted this a few times so sorry if you are reading it again.
My 5 yr old had two borderline sweat chloride test and our ped wants her to be seen by a CF specialist and have genetic testing done. The only symptoms she has is chronic constipation and failure to thrive. She has had some respiratory infections but probably no more than most kids. She has had croup several times.
Has anyone had a similar experience and it turned out to be CF or not CF? Thanks for any advice.
 
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Mistyjo

New member
<p>I have posted this a few times so sorry if you are reading it again.
<p>My 5 yr old had two borderline sweat chloride test and our ped wants her to be seen by a CF specialist and have genetic testing done. The only symptoms she has is chronic constipation and failure to thrive. She has had some respiratory infections but probably no more than most kids. She has had croup several times.
<p>Has anyone had a similar experience and it turned out to be CF or not CF? Thanks for any advice.
 
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Mommafirst

Guest
You probably won't get too many stories here about it not turning out to be CF....those that get cleared disappear pretty quickly.

I'm sorry you are in limbo, its very frustrating. I hope you get some answers.
 
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Mommafirst

Guest
You probably won't get too many stories here about it not turning out to be CF....those that get cleared disappear pretty quickly.

I'm sorry you are in limbo, its very frustrating. I hope you get some answers.
 
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Mommafirst

Guest
You probably won't get too many stories here about it not turning out to be CF....those that get cleared disappear pretty quickly.
<br />
<br />I'm sorry you are in limbo, its very frustrating. I hope you get some answers.
 
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mom2owen

New member
Sorry you are going through this with your daughter, it is an awful thing to have an unwell child <img src="i/expressions/face-icon-small-sad.gif" border="0"> I think reading posts here will show you that you are in good company in looking for answers. Every person is different, some have known mutations and few symptoms and some have less explanation but severe symptoms. I learned that it is a hard question to ask in the initial testing phase because CF is rarely black and white, especially when it isn't diagnosed at birth. I do think it's good of your doctor to look at it since you are dealing with FTT and bowel issues.
Good luck to you, keep reading here and feel free to ask questions. Hope you are doing well despite it all.
 
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mom2owen

New member
Sorry you are going through this with your daughter, it is an awful thing to have an unwell child <img src="i/expressions/face-icon-small-sad.gif" border="0"> I think reading posts here will show you that you are in good company in looking for answers. Every person is different, some have known mutations and few symptoms and some have less explanation but severe symptoms. I learned that it is a hard question to ask in the initial testing phase because CF is rarely black and white, especially when it isn't diagnosed at birth. I do think it's good of your doctor to look at it since you are dealing with FTT and bowel issues.
Good luck to you, keep reading here and feel free to ask questions. Hope you are doing well despite it all.
 
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mom2owen

New member
Sorry you are going through this with your daughter, it is an awful thing to have an unwell child <img src="i/expressions/face-icon-small-sad.gif" border="0"> I think reading posts here will show you that you are in good company in looking for answers. Every person is different, some have known mutations and few symptoms and some have less explanation but severe symptoms. I learned that it is a hard question to ask in the initial testing phase because CF is rarely black and white, especially when it isn't diagnosed at birth. I do think it's good of your doctor to look at it since you are dealing with FTT and bowel issues.
<br />Good luck to you, keep reading here and feel free to ask questions. Hope you are doing well despite it all.
 
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Mistyjo

New member
Thank you both for responding. I appreciate any advice and help. I talk to childrens in the morning to find out when our appt. is with the CF specialist.
 
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Mistyjo

New member
Thank you both for responding. I appreciate any advice and help. I talk to childrens in the morning to find out when our appt. is with the CF specialist.
 
M

Mistyjo

New member
Thank you both for responding. I appreciate any advice and help. I talk to childrens in the morning to find out when our appt. is with the CF specialist.
 
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ymikhale

New member
sorry you are going through this, but on the bright side you are really lucky that your child's doctor is taking the symptoms seriously, you will see many posts here from people struggling with diagnosis and whose doctors simply brush them off. I hope it is not CF but if it is, it is really important to start appropriate treatment early.
 
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ymikhale

New member
sorry you are going through this, but on the bright side you are really lucky that your child's doctor is taking the symptoms seriously, you will see many posts here from people struggling with diagnosis and whose doctors simply brush them off. I hope it is not CF but if it is, it is really important to start appropriate treatment early.
 
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ymikhale

New member
sorry you are going through this, but on the bright side you are really lucky that your child's doctor is taking the symptoms seriously, you will see many posts here from people struggling with diagnosis and whose doctors simply brush them off. I hope it is not CF but if it is, it is really important to start appropriate treatment early.
 
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Mistyjo

New member
She is scheduled for this wed. They didn't waste any time getting her in which makes me a little nervous. I still don't think she has it. She has a a pulmonary fuction test first then she sees the CF specialist.
 
M

Mistyjo

New member
She is scheduled for this wed. They didn't waste any time getting her in which makes me a little nervous. I still don't think she has it. She has a a pulmonary fuction test first then she sees the CF specialist.
 
M

Mistyjo

New member
She is scheduled for this wed. They didn't waste any time getting her in which makes me a little nervous. I still don't think she has it. She has a a pulmonary fuction test first then she sees the CF specialist.
 
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KKN

New member
Mistyjo, our daughter is pancreatic insufficient and had sweat test level of 38 on one arm and 41 on the other. It was a long wait for the genetic test but the test was negative. I read a study that found that borderline sweat test and having a symptom of CF results in about a 1 in 4 chance of having CF. Hang in there. This group was invaluable to me while we went through the testing process.

KKN
 
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KKN

New member
Mistyjo, our daughter is pancreatic insufficient and had sweat test level of 38 on one arm and 41 on the other. It was a long wait for the genetic test but the test was negative. I read a study that found that borderline sweat test and having a symptom of CF results in about a 1 in 4 chance of having CF. Hang in there. This group was invaluable to me while we went through the testing process.

KKN
 
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