Share your stories...need insight!!

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LiLo

New member
Hi everyone! My five month old is scheduled for a sweat test next Monday. At 6 weeks he was hospitalized for apnea and while he was there was diagnosed with RSV. They also diagnosed him with GERD and concluded that the apnea was because of the severe GERD. He has had a constant runny nose (clear) since then and often coughs/gags. His GERD medicine has been changed 7 times in 12 weeks because the dosage doesn't work for long. He also has excema and has been tested for milk, wheat, soy, egg and tree nuts allergies...all came back fine except for peanut. Last week during a crying and coughing fit I pulled a fair amount of mucous out of his mouth. It reminded me of the consistency of mozarella cheese on a pizza. Very stringy and thick although normal in color. He has had a barium swallow that was normal. Has anyone had similar symptoms or stories and what was the outcome?

Thanks in advance for all of your help!
 
L

LiLo

New member
Hi everyone! My five month old is scheduled for a sweat test next Monday. At 6 weeks he was hospitalized for apnea and while he was there was diagnosed with RSV. They also diagnosed him with GERD and concluded that the apnea was because of the severe GERD. He has had a constant runny nose (clear) since then and often coughs/gags. His GERD medicine has been changed 7 times in 12 weeks because the dosage doesn't work for long. He also has excema and has been tested for milk, wheat, soy, egg and tree nuts allergies...all came back fine except for peanut. Last week during a crying and coughing fit I pulled a fair amount of mucous out of his mouth. It reminded me of the consistency of mozarella cheese on a pizza. Very stringy and thick although normal in color. He has had a barium swallow that was normal. Has anyone had similar symptoms or stories and what was the outcome?

Thanks in advance for all of your help!
 
L

LiLo

New member
Hi everyone! My five month old is scheduled for a sweat test next Monday. At 6 weeks he was hospitalized for apnea and while he was there was diagnosed with RSV. They also diagnosed him with GERD and concluded that the apnea was because of the severe GERD. He has had a constant runny nose (clear) since then and often coughs/gags. His GERD medicine has been changed 7 times in 12 weeks because the dosage doesn't work for long. He also has excema and has been tested for milk, wheat, soy, egg and tree nuts allergies...all came back fine except for peanut. Last week during a crying and coughing fit I pulled a fair amount of mucous out of his mouth. It reminded me of the consistency of mozarella cheese on a pizza. Very stringy and thick although normal in color. He has had a barium swallow that was normal. Has anyone had similar symptoms or stories and what was the outcome?

Thanks in advance for all of your help!
 
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NoExcuses

New member
No similar stories but i would strongly encourage you to get an Ambry full panel genetic test. Sweat tests can give false negatives as well as false positives. Genetic tests are so much more accurate. So if you really want to know if it's CF, go with what will give you the most accurate results.
 
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NoExcuses

New member
No similar stories but i would strongly encourage you to get an Ambry full panel genetic test. Sweat tests can give false negatives as well as false positives. Genetic tests are so much more accurate. So if you really want to know if it's CF, go with what will give you the most accurate results.
 
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NoExcuses

New member
No similar stories but i would strongly encourage you to get an Ambry full panel genetic test. Sweat tests can give false negatives as well as false positives. Genetic tests are so much more accurate. So if you really want to know if it's CF, go with what will give you the most accurate results.
 
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tammykrumrey

Guest
I am afraid that my story isn't like yours. I do agree that you need to do the full panel genetic test. There are many on here who have had false negative sweat test, but genetic test comes back positive.
Good luck and I hope your son starts getting well soon!
 
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tammykrumrey

Guest
I am afraid that my story isn't like yours. I do agree that you need to do the full panel genetic test. There are many on here who have had false negative sweat test, but genetic test comes back positive.
Good luck and I hope your son starts getting well soon!
 
T

tammykrumrey

Guest
I am afraid that my story isn't like yours. I do agree that you need to do the full panel genetic test. There are many on here who have had false negative sweat test, but genetic test comes back positive.
Good luck and I hope your son starts getting well soon!
 
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