Awaiting Tests

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Alyssa

New member
Some doctors think they have to see severe symptoms in a person or else it can't possibly be CF...they are dead wrong. Especially when a person has a normal sweat test number....again...my daughters number is also 38...her lung function runs over 100 ...her CT and x-Rays always look normal and good... she is pancreatic sufficient and does not have nutritional absorption issues....She was not diagnosed until age 14.... my son was not diagnosed until age 18... his sweat test is 41...he didn't show any symptoms until age 21....his lung function tests are lower than hers (about 80-85) but still considered "normal" Nearly everything about their health looks "normal"....but we know from experience that without the preventative medications and quickly treating lung infections they would be in far worse shape.

Just because your child does not show classic CF lung damage yet that is no reason to not pursue full genetic testing....there are plenty of people on this site with normal sweat test numbers and mild symptoms but confirmed genetic diagnosis....keep pushing the doctors.... if one won't pursue testing move on to another one until you get someone to order the damn test for you !

edited to add:

I forgot you asked about where people were treating... my kids were diagnosed in Seattle, WA. They have an awesome staff there -- Dr. Gibson is our favorite. My daughter still treats there, my son treats in Bismarck ND...if you would like any more details, please fee free to PM me.
 
A

Alyssa

New member
Some doctors think they have to see severe symptoms in a person or else it can't possibly be CF...they are dead wrong. Especially when a person has a normal sweat test number....again...my daughters number is also 38...her lung function runs over 100 ...her CT and x-Rays always look normal and good... she is pancreatic sufficient and does not have nutritional absorption issues....She was not diagnosed until age 14.... my son was not diagnosed until age 18... his sweat test is 41...he didn't show any symptoms until age 21....his lung function tests are lower than hers (about 80-85) but still considered "normal" Nearly everything about their health looks "normal"....but we know from experience that without the preventative medications and quickly treating lung infections they would be in far worse shape.

Just because your child does not show classic CF lung damage yet that is no reason to not pursue full genetic testing....there are plenty of people on this site with normal sweat test numbers and mild symptoms but confirmed genetic diagnosis....keep pushing the doctors.... if one won't pursue testing move on to another one until you get someone to order the damn test for you !

edited to add:

I forgot you asked about where people were treating... my kids were diagnosed in Seattle, WA. They have an awesome staff there -- Dr. Gibson is our favorite. My daughter still treats there, my son treats in Bismarck ND...if you would like any more details, please fee free to PM me.
 
A

Alyssa

New member
Some doctors think they have to see severe symptoms in a person or else it can't possibly be CF...they are dead wrong. Especially when a person has a normal sweat test number....again...my daughters number is also 38...her lung function runs over 100 ...her CT and x-Rays always look normal and good... she is pancreatic sufficient and does not have nutritional absorption issues....She was not diagnosed until age 14.... my son was not diagnosed until age 18... his sweat test is 41...he didn't show any symptoms until age 21....his lung function tests are lower than hers (about 80-85) but still considered "normal" Nearly everything about their health looks "normal"....but we know from experience that without the preventative medications and quickly treating lung infections they would be in far worse shape.

Just because your child does not show classic CF lung damage yet that is no reason to not pursue full genetic testing....there are plenty of people on this site with normal sweat test numbers and mild symptoms but confirmed genetic diagnosis....keep pushing the doctors.... if one won't pursue testing move on to another one until you get someone to order the damn test for you !

edited to add:

I forgot you asked about where people were treating... my kids were diagnosed in Seattle, WA. They have an awesome staff there -- Dr. Gibson is our favorite. My daughter still treats there, my son treats in Bismarck ND...if you would like any more details, please fee free to PM me.
 
A

Alyssa

New member
Some doctors think they have to see severe symptoms in a person or else it can't possibly be CF...they are dead wrong. Especially when a person has a normal sweat test number....again...my daughters number is also 38...her lung function runs over 100 ...her CT and x-Rays always look normal and good... she is pancreatic sufficient and does not have nutritional absorption issues....She was not diagnosed until age 14.... my son was not diagnosed until age 18... his sweat test is 41...he didn't show any symptoms until age 21....his lung function tests are lower than hers (about 80-85) but still considered "normal" Nearly everything about their health looks "normal"....but we know from experience that without the preventative medications and quickly treating lung infections they would be in far worse shape.

Just because your child does not show classic CF lung damage yet that is no reason to not pursue full genetic testing....there are plenty of people on this site with normal sweat test numbers and mild symptoms but confirmed genetic diagnosis....keep pushing the doctors.... if one won't pursue testing move on to another one until you get someone to order the damn test for you !

edited to add:

I forgot you asked about where people were treating... my kids were diagnosed in Seattle, WA. They have an awesome staff there -- Dr. Gibson is our favorite. My daughter still treats there, my son treats in Bismarck ND...if you would like any more details, please fee free to PM me.
 
A

Alyssa

New member
Some doctors think they have to see severe symptoms in a person or else it can't possibly be CF...they are dead wrong. Especially when a person has a normal sweat test number....again...my daughters number is also 38...her lung function runs over 100 ...her CT and x-Rays always look normal and good... she is pancreatic sufficient and does not have nutritional absorption issues....She was not diagnosed until age 14.... my son was not diagnosed until age 18... his sweat test is 41...he didn't show any symptoms until age 21....his lung function tests are lower than hers (about 80-85) but still considered "normal" Nearly everything about their health looks "normal"....but we know from experience that without the preventative medications and quickly treating lung infections they would be in far worse shape.
<br />
<br />Just because your child does not show classic CF lung damage yet that is no reason to not pursue full genetic testing....there are plenty of people on this site with normal sweat test numbers and mild symptoms but confirmed genetic diagnosis....keep pushing the doctors.... if one won't pursue testing move on to another one until you get someone to order the damn test for you !
<br />
<br />edited to add:
<br />
<br />I forgot you asked about where people were treating... my kids were diagnosed in Seattle, WA. They have an awesome staff there -- Dr. Gibson is our favorite. My daughter still treats there, my son treats in Bismarck ND...if you would like any more details, please fee free to PM me.
 
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schmaeng04

New member
I have a two year old son, Ryan, who was 10 lbs 6 oz when he was born and he was a month early. He is in the 90-100th percentile for height and weight and has had recurrent pneumonia, chronic sinus issues, and frequent ear infections. He had sweat tests when he was a newborn (due to my husband's uncle dying from CF about 20 years ago), but couldn't produce enough sweat and they told us to keep an eye on him. After he had his ear tubes and adenoidectomy, he has had pneumonia three times in the last four months. His pediatrician recommended that he see a pulmonologist. He had another sweat test and it measured 40, borderline for CF. They did a repeat sweat test and he didn't produce enough sweat. They then drew his blood and sent it off for genetic testing, which takes two-three weeks. We live in St. Louis area and there are two centers, St. Louis Children's Hospital (where Ryan's first sweat test was performed 2 years ago) and Cardinal Glennon Hospital in St. Louis where we had his last sweat test and blood test taken this past Tuesday, April 1st, 2008. Hopefully, we are told that he doesn't have it! I hope you are able to get results and it seems like you are trying everything you can to get what's needed...good luck and I am praying for you and your kiddo!
 
S

schmaeng04

New member
I have a two year old son, Ryan, who was 10 lbs 6 oz when he was born and he was a month early. He is in the 90-100th percentile for height and weight and has had recurrent pneumonia, chronic sinus issues, and frequent ear infections. He had sweat tests when he was a newborn (due to my husband's uncle dying from CF about 20 years ago), but couldn't produce enough sweat and they told us to keep an eye on him. After he had his ear tubes and adenoidectomy, he has had pneumonia three times in the last four months. His pediatrician recommended that he see a pulmonologist. He had another sweat test and it measured 40, borderline for CF. They did a repeat sweat test and he didn't produce enough sweat. They then drew his blood and sent it off for genetic testing, which takes two-three weeks. We live in St. Louis area and there are two centers, St. Louis Children's Hospital (where Ryan's first sweat test was performed 2 years ago) and Cardinal Glennon Hospital in St. Louis where we had his last sweat test and blood test taken this past Tuesday, April 1st, 2008. Hopefully, we are told that he doesn't have it! I hope you are able to get results and it seems like you are trying everything you can to get what's needed...good luck and I am praying for you and your kiddo!
 
S

schmaeng04

New member
I have a two year old son, Ryan, who was 10 lbs 6 oz when he was born and he was a month early. He is in the 90-100th percentile for height and weight and has had recurrent pneumonia, chronic sinus issues, and frequent ear infections. He had sweat tests when he was a newborn (due to my husband's uncle dying from CF about 20 years ago), but couldn't produce enough sweat and they told us to keep an eye on him. After he had his ear tubes and adenoidectomy, he has had pneumonia three times in the last four months. His pediatrician recommended that he see a pulmonologist. He had another sweat test and it measured 40, borderline for CF. They did a repeat sweat test and he didn't produce enough sweat. They then drew his blood and sent it off for genetic testing, which takes two-three weeks. We live in St. Louis area and there are two centers, St. Louis Children's Hospital (where Ryan's first sweat test was performed 2 years ago) and Cardinal Glennon Hospital in St. Louis where we had his last sweat test and blood test taken this past Tuesday, April 1st, 2008. Hopefully, we are told that he doesn't have it! I hope you are able to get results and it seems like you are trying everything you can to get what's needed...good luck and I am praying for you and your kiddo!
 
S

schmaeng04

New member
I have a two year old son, Ryan, who was 10 lbs 6 oz when he was born and he was a month early. He is in the 90-100th percentile for height and weight and has had recurrent pneumonia, chronic sinus issues, and frequent ear infections. He had sweat tests when he was a newborn (due to my husband's uncle dying from CF about 20 years ago), but couldn't produce enough sweat and they told us to keep an eye on him. After he had his ear tubes and adenoidectomy, he has had pneumonia three times in the last four months. His pediatrician recommended that he see a pulmonologist. He had another sweat test and it measured 40, borderline for CF. They did a repeat sweat test and he didn't produce enough sweat. They then drew his blood and sent it off for genetic testing, which takes two-three weeks. We live in St. Louis area and there are two centers, St. Louis Children's Hospital (where Ryan's first sweat test was performed 2 years ago) and Cardinal Glennon Hospital in St. Louis where we had his last sweat test and blood test taken this past Tuesday, April 1st, 2008. Hopefully, we are told that he doesn't have it! I hope you are able to get results and it seems like you are trying everything you can to get what's needed...good luck and I am praying for you and your kiddo!
 
S

schmaeng04

New member
I have a two year old son, Ryan, who was 10 lbs 6 oz when he was born and he was a month early. He is in the 90-100th percentile for height and weight and has had recurrent pneumonia, chronic sinus issues, and frequent ear infections. He had sweat tests when he was a newborn (due to my husband's uncle dying from CF about 20 years ago), but couldn't produce enough sweat and they told us to keep an eye on him. After he had his ear tubes and adenoidectomy, he has had pneumonia three times in the last four months. His pediatrician recommended that he see a pulmonologist. He had another sweat test and it measured 40, borderline for CF. They did a repeat sweat test and he didn't produce enough sweat. They then drew his blood and sent it off for genetic testing, which takes two-three weeks. We live in St. Louis area and there are two centers, St. Louis Children's Hospital (where Ryan's first sweat test was performed 2 years ago) and Cardinal Glennon Hospital in St. Louis where we had his last sweat test and blood test taken this past Tuesday, April 1st, 2008. Hopefully, we are told that he doesn't have it! I hope you are able to get results and it seems like you are trying everything you can to get what's needed...good luck and I am praying for you and your kiddo!
 
C

chrissyd

New member
I wasn't dx'd until 21. While I had some issues as a child. (chonic bronchitus and asthma, multiple sinus and ear infections) Up until I was 21, no one ever considered CF. I wasn't sick enough, according to everyone else. My chest ex rays never looked too bad....nothing was obvious.

Finally at 21 I got diagnosed, my mom and dad were/are devestated. They feel they should have pushed harder. Please don't let others talk you out of pushing...my parents did and it lead to a delayed dx.

<img src="i/expressions/rose.gif" border="0">

Chrissy
30 W/CF
 
C

chrissyd

New member
I wasn't dx'd until 21. While I had some issues as a child. (chonic bronchitus and asthma, multiple sinus and ear infections) Up until I was 21, no one ever considered CF. I wasn't sick enough, according to everyone else. My chest ex rays never looked too bad....nothing was obvious.

Finally at 21 I got diagnosed, my mom and dad were/are devestated. They feel they should have pushed harder. Please don't let others talk you out of pushing...my parents did and it lead to a delayed dx.

<img src="i/expressions/rose.gif" border="0">

Chrissy
30 W/CF
 
C

chrissyd

New member
I wasn't dx'd until 21. While I had some issues as a child. (chonic bronchitus and asthma, multiple sinus and ear infections) Up until I was 21, no one ever considered CF. I wasn't sick enough, according to everyone else. My chest ex rays never looked too bad....nothing was obvious.

Finally at 21 I got diagnosed, my mom and dad were/are devestated. They feel they should have pushed harder. Please don't let others talk you out of pushing...my parents did and it lead to a delayed dx.

<img src="i/expressions/rose.gif" border="0">

Chrissy
30 W/CF
 
C

chrissyd

New member
I wasn't dx'd until 21. While I had some issues as a child. (chonic bronchitus and asthma, multiple sinus and ear infections) Up until I was 21, no one ever considered CF. I wasn't sick enough, according to everyone else. My chest ex rays never looked too bad....nothing was obvious.

Finally at 21 I got diagnosed, my mom and dad were/are devestated. They feel they should have pushed harder. Please don't let others talk you out of pushing...my parents did and it lead to a delayed dx.

<img src="i/expressions/rose.gif" border="0">

Chrissy
30 W/CF
 
C

chrissyd

New member
I wasn't dx'd until 21. While I had some issues as a child. (chonic bronchitus and asthma, multiple sinus and ear infections) Up until I was 21, no one ever considered CF. I wasn't sick enough, according to everyone else. My chest ex rays never looked too bad....nothing was obvious.
<br />
<br />Finally at 21 I got diagnosed, my mom and dad were/are devestated. They feel they should have pushed harder. Please don't let others talk you out of pushing...my parents did and it lead to a delayed dx.
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />
<br />Chrissy
<br />30 W/CF
 
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