How Were You / Your Loved One Diagnosed?

[TCNJcystic]

I was diagnosed at age 4, and my physician decided out on a limb to have me sent for a sweat test because I was having irregular bowel movements, but none of the pulmonary symptoms. When the doc suggested the test, my mom asked her if it was because she had seen it on the family history, but the doc hadn't, and it was at that moment they both unofficially realized that was the problem.

 

[momtoCory]

My son was diagnosed at 4 weeks old. He was diagnosed due to failure to thrive. He had a lot of chest congestion and had lost a pound of his birth weight and could not put it back on

Michelle
Cory's mom-20 years old with CF, B. Cepacia

 

[momtoCory]

My son was diagnosed at 4 weeks old. He was diagnosed due to failure to thrive. He had a lot of chest congestion and had lost a pound of his birth weight and could not put it back on

Michelle
Cory's mom-20 years old with CF, B. Cepacia

 

[momtoCory]

My son was diagnosed at 4 weeks old. He was diagnosed due to failure to thrive. He had a lot of chest congestion and had lost a pound of his birth weight and could not put it back on

Michelle
Cory's mom-20 years old with CF, B. Cepacia

 

[coltsfan715]

I was diagnosed on my first birthday. I did not have meconium illues or any other real problems until the age of 6 months. I was gaining weight normally and seemed healthy.

Then at around 6 months my mom started noticing a change in my BMs. Food pretty much just went straight through me. On top of having more frequent BMs - they were this god awful smell. I also started to become sick more often with upper respiratory problems. I do not recall her saying that she ever noticed a saltier taste to my skin though.

My mom conitnually took me to the doc and everytime she would take me the nurses and docs would say she was an overreactive new mother and that I was fine. Well she took me to the hospital I was born at for my 1 yr check up and was explaining that she thought there was a problem. The nurses and docs were having the same response (over reacting new mother) AND THEN ... I had a bowel movement. It was so horrible that the nurses went pouring out of the room and left my mom to handle it. When they opened the door and endocrinologist (familiar with CF) smelled my stool and came in the room. He asked my mom if that was coming from me lol. When she said yes - he said that is not normal and have you had your daughter tested for CF. The rest is history .... They got the test results on my birthday and my parents were notified that day.

Good luck with the testing. I hope your daughter does not have CF. I also hope that whatever the problem may be that they are able to figure it out.

Take Care,
Lindsey

 

[coltsfan715]

I was diagnosed on my first birthday. I did not have meconium illues or any other real problems until the age of 6 months. I was gaining weight normally and seemed healthy.

Then at around 6 months my mom started noticing a change in my BMs. Food pretty much just went straight through me. On top of having more frequent BMs - they were this god awful smell. I also started to become sick more often with upper respiratory problems. I do not recall her saying that she ever noticed a saltier taste to my skin though.

My mom conitnually took me to the doc and everytime she would take me the nurses and docs would say she was an overreactive new mother and that I was fine. Well she took me to the hospital I was born at for my 1 yr check up and was explaining that she thought there was a problem. The nurses and docs were having the same response (over reacting new mother) AND THEN ... I had a bowel movement. It was so horrible that the nurses went pouring out of the room and left my mom to handle it. When they opened the door and endocrinologist (familiar with CF) smelled my stool and came in the room. He asked my mom if that was coming from me lol. When she said yes - he said that is not normal and have you had your daughter tested for CF. The rest is history .... They got the test results on my birthday and my parents were notified that day.

Good luck with the testing. I hope your daughter does not have CF. I also hope that whatever the problem may be that they are able to figure it out.

Take Care,
Lindsey

 

[coltsfan715]

I was diagnosed on my first birthday. I did not have meconium illues or any other real problems until the age of 6 months. I was gaining weight normally and seemed healthy.

Then at around 6 months my mom started noticing a change in my BMs. Food pretty much just went straight through me. On top of having more frequent BMs - they were this god awful smell. I also started to become sick more often with upper respiratory problems. I do not recall her saying that she ever noticed a saltier taste to my skin though.

My mom conitnually took me to the doc and everytime she would take me the nurses and docs would say she was an overreactive new mother and that I was fine. Well she took me to the hospital I was born at for my 1 yr check up and was explaining that she thought there was a problem. The nurses and docs were having the same response (over reacting new mother) AND THEN ... I had a bowel movement. It was so horrible that the nurses went pouring out of the room and left my mom to handle it. When they opened the door and endocrinologist (familiar with CF) smelled my stool and came in the room. He asked my mom if that was coming from me lol. When she said yes - he said that is not normal and have you had your daughter tested for CF. The rest is history .... They got the test results on my birthday and my parents were notified that day.

Good luck with the testing. I hope your daughter does not have CF. I also hope that whatever the problem may be that they are able to figure it out.

Take Care,
Lindsey

 

[Rokiss12]

ah... love this story <img src="i/expressions/face-icon-small-smile.gif" border="0"> haha... the short version: an old italien lady we never knew kissed my cheek outside her restaurant...b/c she was old-lady cute like that, and told my mom i was too salty and to get me checked out <img src="i/expressions/face-icon-small-smile.gif" border="0"> hehe.. oh i wish i still knew her today

 

[Rokiss12]

ah... love this story <img src="i/expressions/face-icon-small-smile.gif" border="0"> haha... the short version: an old italien lady we never knew kissed my cheek outside her restaurant...b/c she was old-lady cute like that, and told my mom i was too salty and to get me checked out <img src="i/expressions/face-icon-small-smile.gif" border="0"> hehe.. oh i wish i still knew her today

 

[Rokiss12]

ah... love this story <img src="i/expressions/face-icon-small-smile.gif" border="0"> haha... the short version: an old italien lady we never knew kissed my cheek outside her restaurant...b/c she was old-lady cute like that, and told my mom i was too salty and to get me checked out <img src="i/expressions/face-icon-small-smile.gif" border="0"> hehe.. oh i wish i still knew her today

 

[sue35]

I was getting a lot of ear infections for years. They did all this allergy testing and slowly came to the idea of CF. I was diagnosed when I was 5.

 

[sue35]

I was getting a lot of ear infections for years. They did all this allergy testing and slowly came to the idea of CF. I was diagnosed when I was 5.

 

[sue35]

I was getting a lot of ear infections for years. They did all this allergy testing and slowly came to the idea of CF. I was diagnosed when I was 5.

 

[wanderlost]

failure to thrive at 6 weeks. I was starving to death. I had to have a blood transfusion and after it my parents didn't recognize me because I looked pink and healthy, not emaciated, wan, and sick. We have a family history of CF (I have an uncle who has it), but my parents were in denial for a long time. We came home to visit my great grandfather from South Africa and he was the one to say that I was a very sick baby. My pediatrician at the time had lost 2 children to CF, so he wasn't wanting to see it either.

 

[wanderlost]

failure to thrive at 6 weeks. I was starving to death. I had to have a blood transfusion and after it my parents didn't recognize me because I looked pink and healthy, not emaciated, wan, and sick. We have a family history of CF (I have an uncle who has it), but my parents were in denial for a long time. We came home to visit my great grandfather from South Africa and he was the one to say that I was a very sick baby. My pediatrician at the time had lost 2 children to CF, so he wasn't wanting to see it either.

 

[wanderlost]

failure to thrive at 6 weeks. I was starving to death. I had to have a blood transfusion and after it my parents didn't recognize me because I looked pink and healthy, not emaciated, wan, and sick. We have a family history of CF (I have an uncle who has it), but my parents were in denial for a long time. We came home to visit my great grandfather from South Africa and he was the one to say that I was a very sick baby. My pediatrician at the time had lost 2 children to CF, so he wasn't wanting to see it either.

 

[princessjdc]

I had pneumonia all the time that wouldnt go away, they would when I was on the antibiotic but after the med was finished I would get sick again and when I was 3 months old I had greasy smelly stools and at 10 months old they diagnosed me with cf

 

[princessjdc]

I had pneumonia all the time that wouldnt go away, they would when I was on the antibiotic but after the med was finished I would get sick again and when I was 3 months old I had greasy smelly stools and at 10 months old they diagnosed me with cf

 

[princessjdc]

I had pneumonia all the time that wouldnt go away, they would when I was on the antibiotic but after the med was finished I would get sick again and when I was 3 months old I had greasy smelly stools and at 10 months old they diagnosed me with cf

 

[blindhearted]

I was born with Meconium Ileus, first sign of CF. I had surgery within 24 hours of being born. They began to treat me as a CF patient from birth. But I was not offical diagnosised with a sweat test until I was 3 months old.