My first visit

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momtojoshua

New member
Hello everyone!
My name is Tina and my son is 19months old. He has had ear infections since he was 4 months old. We just put tubes in his ears on DEC 1st 2006. He had 26 days of relief and then another ear infection. This time he ended up in the hospital with Pnemonia. He has never had thay before. They gave a sweat test and the result was 57. The did it again the next day with the same result. We are waiting to go to the sick kids hospital on Toronto Canada. They have a CF Clinic. Are ear infections related to CF? We are so close to the 60.....Has a reading of 57 ever been a negative? Very anxious for answers.
Thanks
Tina
 
M

momtojoshua

New member
Hello everyone!
My name is Tina and my son is 19months old. He has had ear infections since he was 4 months old. We just put tubes in his ears on DEC 1st 2006. He had 26 days of relief and then another ear infection. This time he ended up in the hospital with Pnemonia. He has never had thay before. They gave a sweat test and the result was 57. The did it again the next day with the same result. We are waiting to go to the sick kids hospital on Toronto Canada. They have a CF Clinic. Are ear infections related to CF? We are so close to the 60.....Has a reading of 57 ever been a negative? Very anxious for answers.
Thanks
Tina
 
M

momtojoshua

New member
Hello everyone!
My name is Tina and my son is 19months old. He has had ear infections since he was 4 months old. We just put tubes in his ears on DEC 1st 2006. He had 26 days of relief and then another ear infection. This time he ended up in the hospital with Pnemonia. He has never had thay before. They gave a sweat test and the result was 57. The did it again the next day with the same result. We are waiting to go to the sick kids hospital on Toronto Canada. They have a CF Clinic. Are ear infections related to CF? We are so close to the 60.....Has a reading of 57 ever been a negative? Very anxious for answers.
Thanks
Tina
 
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tammykrumrey

Guest
Tina,

I am sorry to hear your son is having some problems. I am not sure about ear infections and CF. One of my daughters never had a single ear infection and the other had them so often that she too had to have tubes put in.

As far as the results from your sweat test...I am afraid that someone can have a negative sweat test, but still have CF. I am not sure how often that happens, but there are many on here in which that has happened. Maybe they should run a genetic test to be sure since the number is so close, just to ease your mind.

Good luck,and I hope the dx is no CF, but if it is, you have a place to come to.
 
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tammykrumrey

Guest
Tina,

I am sorry to hear your son is having some problems. I am not sure about ear infections and CF. One of my daughters never had a single ear infection and the other had them so often that she too had to have tubes put in.

As far as the results from your sweat test...I am afraid that someone can have a negative sweat test, but still have CF. I am not sure how often that happens, but there are many on here in which that has happened. Maybe they should run a genetic test to be sure since the number is so close, just to ease your mind.

Good luck,and I hope the dx is no CF, but if it is, you have a place to come to.
 
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tammykrumrey

Guest
Tina,

I am sorry to hear your son is having some problems. I am not sure about ear infections and CF. One of my daughters never had a single ear infection and the other had them so often that she too had to have tubes put in.

As far as the results from your sweat test...I am afraid that someone can have a negative sweat test, but still have CF. I am not sure how often that happens, but there are many on here in which that has happened. Maybe they should run a genetic test to be sure since the number is so close, just to ease your mind.

Good luck,and I hope the dx is no CF, but if it is, you have a place to come to.
 
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Mommafirst

Guest
Hi Tina,

Welcome to the site. I don't really know that ear infections are necessarily a CF thing, but CF can cause the ear fluid to be thicker and retain bacteria that causes infections, so it certainly is possible.

My daughter had a 45 and 53 on her sweat tests, and came back with genetic diagnosis. I was really hopeful when we heard "borderline" that we would not get a diagnosis, and the doctors supported that hope, but I have not seen any of those high borderlines turn out negative. Of course, the only time I see them are people who post around here, so I'm sure its still possible to get a negative after a high borderline.

I'm sorry you are going through this. The not knowing is a really stage, I hope you get some answers (and hope its no CF). If you do get a diagnosis, know that it doesn't change who your Joshua is, and that it is not the end of the world (though it may feel like that for a while).

Welcome to the site, there are amazing people everywhere on here!!!
 
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Mommafirst

Guest
Hi Tina,

Welcome to the site. I don't really know that ear infections are necessarily a CF thing, but CF can cause the ear fluid to be thicker and retain bacteria that causes infections, so it certainly is possible.

My daughter had a 45 and 53 on her sweat tests, and came back with genetic diagnosis. I was really hopeful when we heard "borderline" that we would not get a diagnosis, and the doctors supported that hope, but I have not seen any of those high borderlines turn out negative. Of course, the only time I see them are people who post around here, so I'm sure its still possible to get a negative after a high borderline.

I'm sorry you are going through this. The not knowing is a really stage, I hope you get some answers (and hope its no CF). If you do get a diagnosis, know that it doesn't change who your Joshua is, and that it is not the end of the world (though it may feel like that for a while).

Welcome to the site, there are amazing people everywhere on here!!!
 
M

Mommafirst

Guest
Hi Tina,

Welcome to the site. I don't really know that ear infections are necessarily a CF thing, but CF can cause the ear fluid to be thicker and retain bacteria that causes infections, so it certainly is possible.

My daughter had a 45 and 53 on her sweat tests, and came back with genetic diagnosis. I was really hopeful when we heard "borderline" that we would not get a diagnosis, and the doctors supported that hope, but I have not seen any of those high borderlines turn out negative. Of course, the only time I see them are people who post around here, so I'm sure its still possible to get a negative after a high borderline.

I'm sorry you are going through this. The not knowing is a really stage, I hope you get some answers (and hope its no CF). If you do get a diagnosis, know that it doesn't change who your Joshua is, and that it is not the end of the world (though it may feel like that for a while).

Welcome to the site, there are amazing people everywhere on here!!!
 
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Breezy

New member
SICK KIDS! That's where i was diagnosed with my disease and treated all my life! Stopped going when i was 18 coz i was an adult but i still have to go back once a year. You will be in good hands - great hospital!
 
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Breezy

New member
SICK KIDS! That's where i was diagnosed with my disease and treated all my life! Stopped going when i was 18 coz i was an adult but i still have to go back once a year. You will be in good hands - great hospital!
 
B

Breezy

New member
SICK KIDS! That's where i was diagnosed with my disease and treated all my life! Stopped going when i was 18 coz i was an adult but i still have to go back once a year. You will be in good hands - great hospital!
 
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Alyssa

New member
see my blog page for our full story (link is in my signature line)

sweat tests run
under 40 "normal"
41-60 "borderline"
61 + "positive"

This is the "official" list, but there are many many people here with CF whose sweat tests numbers are in the 30's. So CF doesn't always follow the rules.

Push the doctors for FULL GENETIC TESTING. A sweat test result in high borderline should still peak the curiosity of a good doctor.

I don't know if there is any documented info on a connection between ear infections and CF, but my daughter had a lot of them when she was under age 5, we came very close to putting the tubes in - our last try worked -- going on low level antibiotics for the whole winter -- she didn't have too many problems after that so we didn't do the tubes. We also didn't know she had CF at that time.
 
A

Alyssa

New member
see my blog page for our full story (link is in my signature line)

sweat tests run
under 40 "normal"
41-60 "borderline"
61 + "positive"

This is the "official" list, but there are many many people here with CF whose sweat tests numbers are in the 30's. So CF doesn't always follow the rules.

Push the doctors for FULL GENETIC TESTING. A sweat test result in high borderline should still peak the curiosity of a good doctor.

I don't know if there is any documented info on a connection between ear infections and CF, but my daughter had a lot of them when she was under age 5, we came very close to putting the tubes in - our last try worked -- going on low level antibiotics for the whole winter -- she didn't have too many problems after that so we didn't do the tubes. We also didn't know she had CF at that time.
 
A

Alyssa

New member
see my blog page for our full story (link is in my signature line)

sweat tests run
under 40 "normal"
41-60 "borderline"
61 + "positive"

This is the "official" list, but there are many many people here with CF whose sweat tests numbers are in the 30's. So CF doesn't always follow the rules.

Push the doctors for FULL GENETIC TESTING. A sweat test result in high borderline should still peak the curiosity of a good doctor.

I don't know if there is any documented info on a connection between ear infections and CF, but my daughter had a lot of them when she was under age 5, we came very close to putting the tubes in - our last try worked -- going on low level antibiotics for the whole winter -- she didn't have too many problems after that so we didn't do the tubes. We also didn't know she had CF at that time.
 
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Liamsmommy

New member
Hi there I am in the same boat as you waiting to get into the same clinic as you! we are from Orillia Ontario and have been going through many infections (mainly lungs) and we will be going to the Sick Kids CF/Chest clinic on Feb 22........I will let you know one thing tho they wated us to repeat the Sweat test at sick kids so we just did that On the 25th and are still waiting for the results.....Thoughts and prayers are with you at this time. I have been told that Sick Kids is the best of the best for CF and related chest problems here in Ontario

Feel free to E-mail me or msg me.

Take Care
Shawna
 
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Liamsmommy

New member
Hi there I am in the same boat as you waiting to get into the same clinic as you! we are from Orillia Ontario and have been going through many infections (mainly lungs) and we will be going to the Sick Kids CF/Chest clinic on Feb 22........I will let you know one thing tho they wated us to repeat the Sweat test at sick kids so we just did that On the 25th and are still waiting for the results.....Thoughts and prayers are with you at this time. I have been told that Sick Kids is the best of the best for CF and related chest problems here in Ontario

Feel free to E-mail me or msg me.

Take Care
Shawna
 
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Liamsmommy

New member
Hi there I am in the same boat as you waiting to get into the same clinic as you! we are from Orillia Ontario and have been going through many infections (mainly lungs) and we will be going to the Sick Kids CF/Chest clinic on Feb 22........I will let you know one thing tho they wated us to repeat the Sweat test at sick kids so we just did that On the 25th and are still waiting for the results.....Thoughts and prayers are with you at this time. I have been told that Sick Kids is the best of the best for CF and related chest problems here in Ontario

Feel free to E-mail me or msg me.

Take Care
Shawna
 
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mtgreen30

New member
My son has had chronic ear and sinus infections because of the CF. He is 12y/o and just had his 15th set of tubes put in and his 14th sinus surgery. His docs say it is common for the infections because of the thick secretions. Good luck

megan
 
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mtgreen30

New member
My son has had chronic ear and sinus infections because of the CF. He is 12y/o and just had his 15th set of tubes put in and his 14th sinus surgery. His docs say it is common for the infections because of the thick secretions. Good luck

megan
 
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