How Were You / Your Loved One Diagnosed?

[JRPandTJP]

My son was diagnosed at 3 1/2 months after very little weight gain, vitamin K deficiency and protein and zinc deficiencies. He also had reflux and a rash on his thighs which eventually spread elsewhere. Our full story is located at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/readarticle.php?article_id=1">http://www.cfnutrition4life.co...ticle.php?article_id=1</a> as well as other moms if you're interested. If our state had at birth screening at the time this would have all be mute. Ohio finally added it a couple months ago -- hurray!

Best of luck...we all hope it is not CF of course ;-)

Jody

 

[JRPandTJP]

My son was diagnosed at 3 1/2 months after very little weight gain, vitamin K deficiency and protein and zinc deficiencies. He also had reflux and a rash on his thighs which eventually spread elsewhere. Our full story is located at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cfnutrition4life.com/site/readarticle.php?article_id=1">http://www.cfnutrition4life.co...ticle.php?article_id=1</a> as well as other moms if you're interested. If our state had at birth screening at the time this would have all be mute. Ohio finally added it a couple months ago -- hurray!

Best of luck...we all hope it is not CF of course ;-)

Jody

 

[amber682]

I already posted on how my son was diagnosed, but just wanted to say I think it is very interesting to see how everyone else was diagnosed.

To the original poster: feel free to ask <b>any</b> questions you have, and I hope your daughter is doing okay. <img src="i/expressions/heart.gif" border="0">

 

[amber682]

I already posted on how my son was diagnosed, but just wanted to say I think it is very interesting to see how everyone else was diagnosed.

To the original poster: feel free to ask <b>any</b> questions you have, and I hope your daughter is doing okay. <img src="i/expressions/heart.gif" border="0">

 

[amber682]

I already posted on how my son was diagnosed, but just wanted to say I think it is very interesting to see how everyone else was diagnosed.

To the original poster: feel free to ask <b>any</b> questions you have, and I hope your daughter is doing okay. <img src="i/expressions/heart.gif" border="0">

 

[tammykrumrey]

My oldest daughter was dx at 14 months old due to a rectal prolapse. I had been taking her to the ped. for months complaining that something wasn't right with her poops! And he kept telling me she had milk allergies, or that I was giving her too much juice, which I was not doing! And when I complained that she ate too many times throughout the day and that she was still getting up in the middle of the night to take a bottle, he said she was spoiled. She was beginning to slip off the scale in her weight. The kicker is that this ped. was also my nephews ped. who also has CF. He knew there was a direct connection, we talked about Dalton all the time. Never once did he say lets just rule out CF, and I sure in the heck wouldn't had even dreamt that she had it.
One day I took her in complaining that she was crying during bowel movements and they were happening like 10 times a day and not getting better. Her tushy was raw from all the bm's she was having. He sent me home with a cream for her bottom. Five hours later she was rushed by ambulance with the rectal prolapse, and was tested the next day at St. Louis Childrens Hospital and like everyone else, the rest is history!
Her little sister was dx due to being genetically tested at birth. First genetic test was that she was only a carrier, but when sweat tested, it was positive. And when a longer genetic test was done, the second mutation popped up.

 

[tammykrumrey]

My oldest daughter was dx at 14 months old due to a rectal prolapse. I had been taking her to the ped. for months complaining that something wasn't right with her poops! And he kept telling me she had milk allergies, or that I was giving her too much juice, which I was not doing! And when I complained that she ate too many times throughout the day and that she was still getting up in the middle of the night to take a bottle, he said she was spoiled. She was beginning to slip off the scale in her weight. The kicker is that this ped. was also my nephews ped. who also has CF. He knew there was a direct connection, we talked about Dalton all the time. Never once did he say lets just rule out CF, and I sure in the heck wouldn't had even dreamt that she had it.
One day I took her in complaining that she was crying during bowel movements and they were happening like 10 times a day and not getting better. Her tushy was raw from all the bm's she was having. He sent me home with a cream for her bottom. Five hours later she was rushed by ambulance with the rectal prolapse, and was tested the next day at St. Louis Childrens Hospital and like everyone else, the rest is history!
Her little sister was dx due to being genetically tested at birth. First genetic test was that she was only a carrier, but when sweat tested, it was positive. And when a longer genetic test was done, the second mutation popped up.

 

[tammykrumrey]

My oldest daughter was dx at 14 months old due to a rectal prolapse. I had been taking her to the ped. for months complaining that something wasn't right with her poops! And he kept telling me she had milk allergies, or that I was giving her too much juice, which I was not doing! And when I complained that she ate too many times throughout the day and that she was still getting up in the middle of the night to take a bottle, he said she was spoiled. She was beginning to slip off the scale in her weight. The kicker is that this ped. was also my nephews ped. who also has CF. He knew there was a direct connection, we talked about Dalton all the time. Never once did he say lets just rule out CF, and I sure in the heck wouldn't had even dreamt that she had it.
One day I took her in complaining that she was crying during bowel movements and they were happening like 10 times a day and not getting better. Her tushy was raw from all the bm's she was having. He sent me home with a cream for her bottom. Five hours later she was rushed by ambulance with the rectal prolapse, and was tested the next day at St. Louis Childrens Hospital and like everyone else, the rest is history!
Her little sister was dx due to being genetically tested at birth. First genetic test was that she was only a carrier, but when sweat tested, it was positive. And when a longer genetic test was done, the second mutation popped up.

 

[donnadee]

I was sick alot as a child, first time I had pneumonia I was 3 mo old, had partial obstruction and 2 foot of my colon removed when I was 14, gallbladder removed, and had chronic pancreatitis, once a month for four years and pneumonia at least 2-4 x every year....Went to tons of MD's and they told my mom I was faking it and I just didn't want to go to school and other stuff. Thought I was crazy for years...Finally when I was 33 I moved to Tennesse and got real, real sick and the first pulm that saw me sent me for genetic tests and was positive for CF....What a mess....but at least I know now.

 

[donnadee]

I was sick alot as a child, first time I had pneumonia I was 3 mo old, had partial obstruction and 2 foot of my colon removed when I was 14, gallbladder removed, and had chronic pancreatitis, once a month for four years and pneumonia at least 2-4 x every year....Went to tons of MD's and they told my mom I was faking it and I just didn't want to go to school and other stuff. Thought I was crazy for years...Finally when I was 33 I moved to Tennesse and got real, real sick and the first pulm that saw me sent me for genetic tests and was positive for CF....What a mess....but at least I know now.

 

[donnadee]

I was sick alot as a child, first time I had pneumonia I was 3 mo old, had partial obstruction and 2 foot of my colon removed when I was 14, gallbladder removed, and had chronic pancreatitis, once a month for four years and pneumonia at least 2-4 x every year....Went to tons of MD's and they told my mom I was faking it and I just didn't want to go to school and other stuff. Thought I was crazy for years...Finally when I was 33 I moved to Tennesse and got real, real sick and the first pulm that saw me sent me for genetic tests and was positive for CF....What a mess....but at least I know now.

 

[loveee12]

I love telling this story --
When I was a newborn, I could eat more than my mom. My mom, a pediatrician, was observant and suspicious right off the bat. So she knew the symptoms of CF, and one warm day she picked me up and kissed me on the forehead - and tasted the excessive salt on her lips. She had an offical test done, and I was diagnosed as an infant.
-- I love my mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[loveee12]

I love telling this story --
When I was a newborn, I could eat more than my mom. My mom, a pediatrician, was observant and suspicious right off the bat. So she knew the symptoms of CF, and one warm day she picked me up and kissed me on the forehead - and tasted the excessive salt on her lips. She had an offical test done, and I was diagnosed as an infant.
-- I love my mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[loveee12]

I love telling this story --
When I was a newborn, I could eat more than my mom. My mom, a pediatrician, was observant and suspicious right off the bat. So she knew the symptoms of CF, and one warm day she picked me up and kissed me on the forehead - and tasted the excessive salt on her lips. She had an offical test done, and I was diagnosed as an infant.
-- I love my mom <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[hhildema]

Thank you all for your replies. My daughter was scheduled to see her ped for her 3-year well-check yesterday but we had a significant snowstorm here in Milwaukee so her ped's office closed. She's rescheduled for Monday 12/4 so we'll see how it goes as far as her ped being willing to proceed w/ testing. Tammy,
your story strikes close to home b/c I've complained of irregularities w/ my daughter's bm's for almost a year now. She's currently on Glucolax which pulls more water into her intestines to help get the poop out, but it still comes out so abnormal - the stench is stomach-turning and sometimes she passes mucous with it. I hope that w/ her history of that and the ongoing / chronic respiratory "infections" her ped agrees that it would make the most sense to test to rule out CF and anything that may include similar symptoms.

One thing I've picked up on so far is that CF seems to be more treatable. I know when my brother was diagnosed in 1978 there was not much hope offered in regards to treatment and life expectancy. They said he would live to age 4 and he lived to the "ripe old age" of 7 1/2. I estimate he spent about a third of his life in the hospital very ill.

CF patients and their loved ones hold a special place in my heart and I will continue to think about and pray for all of you regardless of how things turn out w/ my daughter. I will keep you all posted!

 

[hhildema]

Thank you all for your replies. My daughter was scheduled to see her ped for her 3-year well-check yesterday but we had a significant snowstorm here in Milwaukee so her ped's office closed. She's rescheduled for Monday 12/4 so we'll see how it goes as far as her ped being willing to proceed w/ testing. Tammy,
your story strikes close to home b/c I've complained of irregularities w/ my daughter's bm's for almost a year now. She's currently on Glucolax which pulls more water into her intestines to help get the poop out, but it still comes out so abnormal - the stench is stomach-turning and sometimes she passes mucous with it. I hope that w/ her history of that and the ongoing / chronic respiratory "infections" her ped agrees that it would make the most sense to test to rule out CF and anything that may include similar symptoms.

One thing I've picked up on so far is that CF seems to be more treatable. I know when my brother was diagnosed in 1978 there was not much hope offered in regards to treatment and life expectancy. They said he would live to age 4 and he lived to the "ripe old age" of 7 1/2. I estimate he spent about a third of his life in the hospital very ill.

CF patients and their loved ones hold a special place in my heart and I will continue to think about and pray for all of you regardless of how things turn out w/ my daughter. I will keep you all posted!

 

[hhildema]

Thank you all for your replies. My daughter was scheduled to see her ped for her 3-year well-check yesterday but we had a significant snowstorm here in Milwaukee so her ped's office closed. She's rescheduled for Monday 12/4 so we'll see how it goes as far as her ped being willing to proceed w/ testing. Tammy,
your story strikes close to home b/c I've complained of irregularities w/ my daughter's bm's for almost a year now. She's currently on Glucolax which pulls more water into her intestines to help get the poop out, but it still comes out so abnormal - the stench is stomach-turning and sometimes she passes mucous with it. I hope that w/ her history of that and the ongoing / chronic respiratory "infections" her ped agrees that it would make the most sense to test to rule out CF and anything that may include similar symptoms.

One thing I've picked up on so far is that CF seems to be more treatable. I know when my brother was diagnosed in 1978 there was not much hope offered in regards to treatment and life expectancy. They said he would live to age 4 and he lived to the "ripe old age" of 7 1/2. I estimate he spent about a third of his life in the hospital very ill.

CF patients and their loved ones hold a special place in my heart and I will continue to think about and pray for all of you regardless of how things turn out w/ my daughter. I will keep you all posted!

 

[PinkRaysOfSunshine]

thats awful u went so long without being dx but at the same time it kinda gives me hope. that you can live that long.... (44) without the right meds and treatment.... knowing that I knew about my daughter having cf before she was born... gives me so much hope....... that lil fat kid of mine will probably out live me....

 

[PinkRaysOfSunshine]

thats awful u went so long without being dx but at the same time it kinda gives me hope. that you can live that long.... (44) without the right meds and treatment.... knowing that I knew about my daughter having cf before she was born... gives me so much hope....... that lil fat kid of mine will probably out live me....

 

[PinkRaysOfSunshine]

thats awful u went so long without being dx but at the same time it kinda gives me hope. that you can live that long.... (44) without the right meds and treatment.... knowing that I knew about my daughter having cf before she was born... gives me so much hope....... that lil fat kid of mine will probably out live me....