diagnosis story

[wanderlost]

I think we have done this before, but I con't remember and was thinking I'd like to hear everyones tale of how they were dxed, so if you're so inclined, do share.

I was diagnosed with failure to thrive at 6 weeks old. I wasn't gaining weight, crying all the time out of hunger, had developed a little wound near my eye from malnutrition. The thing is CF is in our family (my maternal uncle - now 55 - has it!), but my paretns just didn't want to see it - and my pediatrician at the time had lost 2 kids to Cf so he was in denial too! My great grandfather from South Africa was finally the one who declared "there is something worng with that baby!" I spent a bit of time in the hospital after that and had a blood transfusion. Apparently my color had so improved that my mother did not even recognize me and asked the nurses "what they did to my baby!" I was put on enzymes after that, and, the rest is history!

 

[wanderlost]

I think we have done this before, but I con't remember and was thinking I'd like to hear everyones tale of how they were dxed, so if you're so inclined, do share.

I was diagnosed with failure to thrive at 6 weeks old. I wasn't gaining weight, crying all the time out of hunger, had developed a little wound near my eye from malnutrition. The thing is CF is in our family (my maternal uncle - now 55 - has it!), but my paretns just didn't want to see it - and my pediatrician at the time had lost 2 kids to Cf so he was in denial too! My great grandfather from South Africa was finally the one who declared "there is something worng with that baby!" I spent a bit of time in the hospital after that and had a blood transfusion. Apparently my color had so improved that my mother did not even recognize me and asked the nurses "what they did to my baby!" I was put on enzymes after that, and, the rest is history!

 

[wanderlost]

I think we have done this before, but I con't remember and was thinking I'd like to hear everyones tale of how they were dxed, so if you're so inclined, do share.

I was diagnosed with failure to thrive at 6 weeks old. I wasn't gaining weight, crying all the time out of hunger, had developed a little wound near my eye from malnutrition. The thing is CF is in our family (my maternal uncle - now 55 - has it!), but my paretns just didn't want to see it - and my pediatrician at the time had lost 2 kids to Cf so he was in denial too! My great grandfather from South Africa was finally the one who declared "there is something worng with that baby!" I spent a bit of time in the hospital after that and had a blood transfusion. Apparently my color had so improved that my mother did not even recognize me and asked the nurses "what they did to my baby!" I was put on enzymes after that, and, the rest is history!

 

[Ratatosk]

I went into labor at about 36 weeks. Kept calling the hospital saying I'd been timing the contractions and they kept putting me off saying I wasn't due for several more weeks. I finally just went there and asked them to check me out. Kept me! When they broke my water, they noticed the amniotic fluid was tinged green and thought DS had stooled in the womb. Had a whole NICU crew in the delivery room on hand to suction him and he spent the night in the NICU for observation. 2-3 doctors looked him over and said he was fine.

I remember giving DS his first bottle and he wouldn't stop eating. He was a maniac and I remarked to DH, what to I do? Do babies EAT this much. A little while later a pediatrician came in and said he looked him over and said he seems to have a LOT of stool in his abdomen. But first time mom -- I didn't know I should be concerned and he didn't indicate anything needed to be done.

Later in the afternoon a friend came to visit who had been an OB nurse and she was holding him and panicked 'cuz he acted like he was choking. Proceeded to HURL green stuff. A neonatologist had come in and ordered xrays, determined there was an intestinal blockage. The peds surgeon was on vacation, wouldn't be back for a week, they needed to lifeflight him to a children's hospital with a high level NICU. Oh, and by the way, he could have cystic fibrosis.

While waiting for DS to recover from his surgery, we kept thinking CF -- what's that. Wracked our brains, reviewed family history -- Nah, can't be true. Surgeon came in and explained the repair work, recovery time and BTW, classic CF symtoms... 5 days later, blood tests came back indicating he had CF.

Spent 4 weeks in the NICU recovering. Put on enzymes, CPT, nebs... Today he's a busy busy toddler!

 

[Ratatosk]

I went into labor at about 36 weeks. Kept calling the hospital saying I'd been timing the contractions and they kept putting me off saying I wasn't due for several more weeks. I finally just went there and asked them to check me out. Kept me! When they broke my water, they noticed the amniotic fluid was tinged green and thought DS had stooled in the womb. Had a whole NICU crew in the delivery room on hand to suction him and he spent the night in the NICU for observation. 2-3 doctors looked him over and said he was fine.

I remember giving DS his first bottle and he wouldn't stop eating. He was a maniac and I remarked to DH, what to I do? Do babies EAT this much. A little while later a pediatrician came in and said he looked him over and said he seems to have a LOT of stool in his abdomen. But first time mom -- I didn't know I should be concerned and he didn't indicate anything needed to be done.

Later in the afternoon a friend came to visit who had been an OB nurse and she was holding him and panicked 'cuz he acted like he was choking. Proceeded to HURL green stuff. A neonatologist had come in and ordered xrays, determined there was an intestinal blockage. The peds surgeon was on vacation, wouldn't be back for a week, they needed to lifeflight him to a children's hospital with a high level NICU. Oh, and by the way, he could have cystic fibrosis.

While waiting for DS to recover from his surgery, we kept thinking CF -- what's that. Wracked our brains, reviewed family history -- Nah, can't be true. Surgeon came in and explained the repair work, recovery time and BTW, classic CF symtoms... 5 days later, blood tests came back indicating he had CF.

Spent 4 weeks in the NICU recovering. Put on enzymes, CPT, nebs... Today he's a busy busy toddler!

 

[Ratatosk]

I went into labor at about 36 weeks. Kept calling the hospital saying I'd been timing the contractions and they kept putting me off saying I wasn't due for several more weeks. I finally just went there and asked them to check me out. Kept me! When they broke my water, they noticed the amniotic fluid was tinged green and thought DS had stooled in the womb. Had a whole NICU crew in the delivery room on hand to suction him and he spent the night in the NICU for observation. 2-3 doctors looked him over and said he was fine.

I remember giving DS his first bottle and he wouldn't stop eating. He was a maniac and I remarked to DH, what to I do? Do babies EAT this much. A little while later a pediatrician came in and said he looked him over and said he seems to have a LOT of stool in his abdomen. But first time mom -- I didn't know I should be concerned and he didn't indicate anything needed to be done.

Later in the afternoon a friend came to visit who had been an OB nurse and she was holding him and panicked 'cuz he acted like he was choking. Proceeded to HURL green stuff. A neonatologist had come in and ordered xrays, determined there was an intestinal blockage. The peds surgeon was on vacation, wouldn't be back for a week, they needed to lifeflight him to a children's hospital with a high level NICU. Oh, and by the way, he could have cystic fibrosis.

While waiting for DS to recover from his surgery, we kept thinking CF -- what's that. Wracked our brains, reviewed family history -- Nah, can't be true. Surgeon came in and explained the repair work, recovery time and BTW, classic CF symtoms... 5 days later, blood tests came back indicating he had CF.

Spent 4 weeks in the NICU recovering. Put on enzymes, CPT, nebs... Today he's a busy busy toddler!

 

[AnD]

I was diagnosed at birth due to meconiumillius, and had 4 more sweat tests (one everytime we moved- we lived 5 different places- 4 states- before I was 6 yrs old!) at each new clinic because the dr.s didn't believe I had cf. That wasn't a problem by the time I got switched to the adult clinic (at age 29), though <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

I was diagnosed at birth due to meconiumillius, and had 4 more sweat tests (one everytime we moved- we lived 5 different places- 4 states- before I was 6 yrs old!) at each new clinic because the dr.s didn't believe I had cf. That wasn't a problem by the time I got switched to the adult clinic (at age 29), though <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[AnD]

I was diagnosed at birth due to meconiumillius, and had 4 more sweat tests (one everytime we moved- we lived 5 different places- 4 states- before I was 6 yrs old!) at each new clinic because the dr.s didn't believe I had cf. That wasn't a problem by the time I got switched to the adult clinic (at age 29), though <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

 

[littletally]

I was tested when I was born and it came back negative because I had other complications. I was born with my insides hanging out so there fore I have no belly button!! Anyway from then on they said I had asthma and walking pnemonia alot and finally when I was 8 they tested me twice and both times came back positive. Yipee for me!!! (yeah right) Then my brothers got tested and one of them also tested positive and almost 20 years later here I am!

Nikki
27 with cf

 

[littletally]

I was tested when I was born and it came back negative because I had other complications. I was born with my insides hanging out so there fore I have no belly button!! Anyway from then on they said I had asthma and walking pnemonia alot and finally when I was 8 they tested me twice and both times came back positive. Yipee for me!!! (yeah right) Then my brothers got tested and one of them also tested positive and almost 20 years later here I am!

Nikki
27 with cf

 

[littletally]

I was tested when I was born and it came back negative because I had other complications. I was born with my insides hanging out so there fore I have no belly button!! Anyway from then on they said I had asthma and walking pnemonia alot and finally when I was 8 they tested me twice and both times came back positive. Yipee for me!!! (yeah right) Then my brothers got tested and one of them also tested positive and almost 20 years later here I am!

Nikki
27 with cf

 

[tammykrumrey]

My nephew was dx due to MI at two days old. We were like everyone...in complete shock, had no idea what it was. The surgeon came in after exploratory surgery and said that Dalton had CF, and all he could tell us was that they didn't live long lives, and left us all to cry in the waiting room! What bedside manners!

Six and a half years later my daughter Kayla was born. She had a lot of symptoms, although I didn't realize it then (my nephew didn't have the 'symptoms' because he was already on enzymes...). She was dx at 14 months after a rectal prolapse. She was really beginning to malnourish at the time and her (also my CF nephews) pediatrician kept telling me she was eating 12 times a day because she was spoiled (only weighed 18 lbs at 14 mnths) and that she was pooping 10 times a day because I was giving her juice (which I wasn't) and that she was normal! The last time he told me this, she was rushed by ambulance within 5 hours of leaving his office from the rectal prolapse.

Was pregnant with daughter number two at the time...5 months pregnant...and she was dx at 1 month after the first genetic test failed to test for the 1898+1G>A, only finding the DelF508 (done at the hospital where she was born) At the request of Kaylas CF clinic, a second genetic test was done at clinic, as well as the sweat test coming in at 116, confirming what I knew in my heart.

I will never forget the exact place I was sitting, nor the exact words spoken to me/us during all three of the dx's.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[tammykrumrey]

My nephew was dx due to MI at two days old. We were like everyone...in complete shock, had no idea what it was. The surgeon came in after exploratory surgery and said that Dalton had CF, and all he could tell us was that they didn't live long lives, and left us all to cry in the waiting room! What bedside manners!

Six and a half years later my daughter Kayla was born. She had a lot of symptoms, although I didn't realize it then (my nephew didn't have the 'symptoms' because he was already on enzymes...). She was dx at 14 months after a rectal prolapse. She was really beginning to malnourish at the time and her (also my CF nephews) pediatrician kept telling me she was eating 12 times a day because she was spoiled (only weighed 18 lbs at 14 mnths) and that she was pooping 10 times a day because I was giving her juice (which I wasn't) and that she was normal! The last time he told me this, she was rushed by ambulance within 5 hours of leaving his office from the rectal prolapse.

Was pregnant with daughter number two at the time...5 months pregnant...and she was dx at 1 month after the first genetic test failed to test for the 1898+1G>A, only finding the DelF508 (done at the hospital where she was born) At the request of Kaylas CF clinic, a second genetic test was done at clinic, as well as the sweat test coming in at 116, confirming what I knew in my heart.

I will never forget the exact place I was sitting, nor the exact words spoken to me/us during all three of the dx's.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[tammykrumrey]

My nephew was dx due to MI at two days old. We were like everyone...in complete shock, had no idea what it was. The surgeon came in after exploratory surgery and said that Dalton had CF, and all he could tell us was that they didn't live long lives, and left us all to cry in the waiting room! What bedside manners!

Six and a half years later my daughter Kayla was born. She had a lot of symptoms, although I didn't realize it then (my nephew didn't have the 'symptoms' because he was already on enzymes...). She was dx at 14 months after a rectal prolapse. She was really beginning to malnourish at the time and her (also my CF nephews) pediatrician kept telling me she was eating 12 times a day because she was spoiled (only weighed 18 lbs at 14 mnths) and that she was pooping 10 times a day because I was giving her juice (which I wasn't) and that she was normal! The last time he told me this, she was rushed by ambulance within 5 hours of leaving his office from the rectal prolapse.

Was pregnant with daughter number two at the time...5 months pregnant...and she was dx at 1 month after the first genetic test failed to test for the 1898+1G>A, only finding the DelF508 (done at the hospital where she was born) At the request of Kaylas CF clinic, a second genetic test was done at clinic, as well as the sweat test coming in at 116, confirming what I knew in my heart.

I will never forget the exact place I was sitting, nor the exact words spoken to me/us during all three of the dx's.<img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[nicolaj]

my story is almost exact to yours Wanderlost. at afew weeks old i was constantly wanting more milk,never getting full.i had very bad stools also.my mothers sister had cf, and she had also lost a brother from the illness, so it was already diagnosed in the family.

nicola xx

 

[nicolaj]

my story is almost exact to yours Wanderlost. at afew weeks old i was constantly wanting more milk,never getting full.i had very bad stools also.my mothers sister had cf, and she had also lost a brother from the illness, so it was already diagnosed in the family.

nicola xx

 

[nicolaj]

my story is almost exact to yours Wanderlost. at afew weeks old i was constantly wanting more milk,never getting full.i had very bad stools also.my mothers sister had cf, and she had also lost a brother from the illness, so it was already diagnosed in the family.

nicola xx

 

[donnadee]

I was always sick with bronchitis and pneumonia and GI problems my whole life. When I was 33 I moved to Tennessee from Florida and I ended up with pneumonia so bad and it would not go away this time. My FEV1 was 55% and I cultured PA. The first Pulmonoligist I saw did a DNA test and found that I have CF. It has taken over a year to get rid of the fevers, nine hositals visits later I am finally starting to improve. No fevers in a month, but my FEV1 is now down to 29%. I cannot work at the moment, but am hoping to go back in a few months. Sorry this was so long winded.

 

[donnadee]

I was always sick with bronchitis and pneumonia and GI problems my whole life. When I was 33 I moved to Tennessee from Florida and I ended up with pneumonia so bad and it would not go away this time. My FEV1 was 55% and I cultured PA. The first Pulmonoligist I saw did a DNA test and found that I have CF. It has taken over a year to get rid of the fevers, nine hositals visits later I am finally starting to improve. No fevers in a month, but my FEV1 is now down to 29%. I cannot work at the moment, but am hoping to go back in a few months. Sorry this was so long winded.