I am so confused!

nmcspadd · Mar 26, 2008

Hello,

I am new here and seeking advice about where to go from here. My daughter is 16 months old and has quite a history. Among other things: reflux, recurrent ear infections even after tubes were put in at 6 months, food intolerances, chronic diarrhea, and she just seems to get sick often and hard. Starting this year she began having some respiratory issues, including low pulse ox and a bad cough. She also gained no weight for 3 months and is slipping off the charts, and the doctors began to worry about CF.

Her sweat conductivity was positive at 66, but sweat chloride was negative at 6. She has borderline low pancreatic elastase--it's in the low normal range, but they've started her on Creon, which has helped with her eating habits and weight gain. She cultured positive for staph but nothing else (they're not planning to treat it for now). She had a chest x-ray that they were worried about a couple of weeks ago, but we went in for a CT scan on Monday and I just learned that it was completely clear. We're waiting to hear results from a genetic test--they sent her blood to Genzyme for the panel of 97 mutations. Given the sweat chloride, sputum culture and CT scan results, our pulmonologist says it's almost definitely not CF.

So she (dr) wants to see us at the end of the summer but we should call her in the meantime if we start to have respiratory concerns about Lainey. (Pending genetic test results.)

I guess my question, at the end of this very long email, is how reassured (or not) I should feel about the results so far. I was fully expecting to hear that the CT scan revealed bronchiectasis and was very surprised to hear that it was clear. I'm just confused and trying to figure out if I should push to treat this as CF or just go with the flow for now. (Right now, she's on Creon and Prevacid, and we have Albuterol in a nebulizer that we use as needed, which isn't very often.)

Thanks so much for taking the time to read this and offer any advice you might have!!

Nadine

nmcspadd · Mar 26, 2008

Hello,

I am new here and seeking advice about where to go from here. My daughter is 16 months old and has quite a history. Among other things: reflux, recurrent ear infections even after tubes were put in at 6 months, food intolerances, chronic diarrhea, and she just seems to get sick often and hard. Starting this year she began having some respiratory issues, including low pulse ox and a bad cough. She also gained no weight for 3 months and is slipping off the charts, and the doctors began to worry about CF.

Her sweat conductivity was positive at 66, but sweat chloride was negative at 6. She has borderline low pancreatic elastase--it's in the low normal range, but they've started her on Creon, which has helped with her eating habits and weight gain. She cultured positive for staph but nothing else (they're not planning to treat it for now). She had a chest x-ray that they were worried about a couple of weeks ago, but we went in for a CT scan on Monday and I just learned that it was completely clear. We're waiting to hear results from a genetic test--they sent her blood to Genzyme for the panel of 97 mutations. Given the sweat chloride, sputum culture and CT scan results, our pulmonologist says it's almost definitely not CF.

So she (dr) wants to see us at the end of the summer but we should call her in the meantime if we start to have respiratory concerns about Lainey. (Pending genetic test results.)

I guess my question, at the end of this very long email, is how reassured (or not) I should feel about the results so far. I was fully expecting to hear that the CT scan revealed bronchiectasis and was very surprised to hear that it was clear. I'm just confused and trying to figure out if I should push to treat this as CF or just go with the flow for now. (Right now, she's on Creon and Prevacid, and we have Albuterol in a nebulizer that we use as needed, which isn't very often.)

Thanks so much for taking the time to read this and offer any advice you might have!!

Nadine

nmcspadd · Mar 26, 2008

Hello,

I am new here and seeking advice about where to go from here. My daughter is 16 months old and has quite a history. Among other things: reflux, recurrent ear infections even after tubes were put in at 6 months, food intolerances, chronic diarrhea, and she just seems to get sick often and hard. Starting this year she began having some respiratory issues, including low pulse ox and a bad cough. She also gained no weight for 3 months and is slipping off the charts, and the doctors began to worry about CF.

Her sweat conductivity was positive at 66, but sweat chloride was negative at 6. She has borderline low pancreatic elastase--it's in the low normal range, but they've started her on Creon, which has helped with her eating habits and weight gain. She cultured positive for staph but nothing else (they're not planning to treat it for now). She had a chest x-ray that they were worried about a couple of weeks ago, but we went in for a CT scan on Monday and I just learned that it was completely clear. We're waiting to hear results from a genetic test--they sent her blood to Genzyme for the panel of 97 mutations. Given the sweat chloride, sputum culture and CT scan results, our pulmonologist says it's almost definitely not CF.

So she (dr) wants to see us at the end of the summer but we should call her in the meantime if we start to have respiratory concerns about Lainey. (Pending genetic test results.)

I guess my question, at the end of this very long email, is how reassured (or not) I should feel about the results so far. I was fully expecting to hear that the CT scan revealed bronchiectasis and was very surprised to hear that it was clear. I'm just confused and trying to figure out if I should push to treat this as CF or just go with the flow for now. (Right now, she's on Creon and Prevacid, and we have Albuterol in a nebulizer that we use as needed, which isn't very often.)

Thanks so much for taking the time to read this and offer any advice you might have!!

Nadine

nmcspadd · Mar 26, 2008

Hello,

I am new here and seeking advice about where to go from here. My daughter is 16 months old and has quite a history. Among other things: reflux, recurrent ear infections even after tubes were put in at 6 months, food intolerances, chronic diarrhea, and she just seems to get sick often and hard. Starting this year she began having some respiratory issues, including low pulse ox and a bad cough. She also gained no weight for 3 months and is slipping off the charts, and the doctors began to worry about CF.

Her sweat conductivity was positive at 66, but sweat chloride was negative at 6. She has borderline low pancreatic elastase--it's in the low normal range, but they've started her on Creon, which has helped with her eating habits and weight gain. She cultured positive for staph but nothing else (they're not planning to treat it for now). She had a chest x-ray that they were worried about a couple of weeks ago, but we went in for a CT scan on Monday and I just learned that it was completely clear. We're waiting to hear results from a genetic test--they sent her blood to Genzyme for the panel of 97 mutations. Given the sweat chloride, sputum culture and CT scan results, our pulmonologist says it's almost definitely not CF.

So she (dr) wants to see us at the end of the summer but we should call her in the meantime if we start to have respiratory concerns about Lainey. (Pending genetic test results.)

I guess my question, at the end of this very long email, is how reassured (or not) I should feel about the results so far. I was fully expecting to hear that the CT scan revealed bronchiectasis and was very surprised to hear that it was clear. I'm just confused and trying to figure out if I should push to treat this as CF or just go with the flow for now. (Right now, she's on Creon and Prevacid, and we have Albuterol in a nebulizer that we use as needed, which isn't very often.)

Thanks so much for taking the time to read this and offer any advice you might have!!

Nadine

nmcspadd · Mar 26, 2008

Hello,
 
 I am new here and seeking advice about where to go from here. My daughter is 16 months old and has quite a history. Among other things: reflux, recurrent ear infections even after tubes were put in at 6 months, food intolerances, chronic diarrhea, and she just seems to get sick often and hard. Starting this year she began having some respiratory issues, including low pulse ox and a bad cough. She also gained no weight for 3 months and is slipping off the charts, and the doctors began to worry about CF.
 
 Her sweat conductivity was positive at 66, but sweat chloride was negative at 6. She has borderline low pancreatic elastase--it's in the low normal range, but they've started her on Creon, which has helped with her eating habits and weight gain. She cultured positive for staph but nothing else (they're not planning to treat it for now). She had a chest x-ray that they were worried about a couple of weeks ago, but we went in for a CT scan on Monday and I just learned that it was completely clear. We're waiting to hear results from a genetic test--they sent her blood to Genzyme for the panel of 97 mutations. Given the sweat chloride, sputum culture and CT scan results, our pulmonologist says it's almost definitely not CF.
 
 So she (dr) wants to see us at the end of the summer but we should call her in the meantime if we start to have respiratory concerns about Lainey. (Pending genetic test results.)
 
 I guess my question, at the end of this very long email, is how reassured (or not) I should feel about the results so far. I was fully expecting to hear that the CT scan revealed bronchiectasis and was very surprised to hear that it was clear. I'm just confused and trying to figure out if I should push to treat this as CF or just go with the flow for now. (Right now, she's on Creon and Prevacid, and we have Albuterol in a nebulizer that we use as needed, which isn't very often.)
 
 Thanks so much for taking the time to read this and offer any advice you might have!!
 
 Nadine

MargaritaChic · Mar 26, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: nmcspadd
our pulmonologist says it's almost definitely not CF.</end quote></div>

It worries me that your doctor said this to you. I am not sure how he/she can make such a statement. The symptoms you described could be many different things, but they could also indicated CF.

Also, There are about 1,500 CF mutations. If they are only testing your child for 97 of those ... that is not enough. If it comes back negative I would push for better testing just to be sure.

I hope it is not CF. But if it is, then early treatment is important.

(hugs)

MargaritaChic · Mar 26, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: nmcspadd
our pulmonologist says it's almost definitely not CF.</end quote></div>

It worries me that your doctor said this to you. I am not sure how he/she can make such a statement. The symptoms you described could be many different things, but they could also indicated CF.

Also, There are about 1,500 CF mutations. If they are only testing your child for 97 of those ... that is not enough. If it comes back negative I would push for better testing just to be sure.

I hope it is not CF. But if it is, then early treatment is important.

(hugs)

MargaritaChic · Mar 26, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: nmcspadd
our pulmonologist says it's almost definitely not CF.</end quote></div>

It worries me that your doctor said this to you. I am not sure how he/she can make such a statement. The symptoms you described could be many different things, but they could also indicated CF.

Also, There are about 1,500 CF mutations. If they are only testing your child for 97 of those ... that is not enough. If it comes back negative I would push for better testing just to be sure.

I hope it is not CF. But if it is, then early treatment is important.

(hugs)

MargaritaChic · Mar 26, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: nmcspadd
our pulmonologist says it's almost definitely not CF.</end quote>

It worries me that your doctor said this to you. I am not sure how he/she can make such a statement. The symptoms you described could be many different things, but they could also indicated CF.

Also, There are about 1,500 CF mutations. If they are only testing your child for 97 of those ... that is not enough. If it comes back negative I would push for better testing just to be sure.

I hope it is not CF. But if it is, then early treatment is important.

(hugs)

MargaritaChic · Mar 26, 2008

<div class="FTQUOTE"><begin quote>Originally posted by: nmcspadd
 our pulmonologist says it's almost definitely not CF.</end quote>
 
 It worries me that your doctor said this to you. I am not sure how he/she can make such a statement. The symptoms you described could be many different things, but they could also indicated CF.
 
 Also, There are about 1,500 CF mutations. If they are only testing your child for 97 of those ... that is not enough. If it comes back negative I would push for better testing just to be sure.
 
 I hope it is not CF. But if it is, then early treatment is important.
 
 (hugs)

zoe4life · Mar 26, 2008

Nadine,

I would do exactly what you are doing...treat her like you are presently and wait for the genetics to come back. It really should only take about a week, some people say a lot longer, but I have found that if you call your doctors office about a week after having it done and request them to actually 'call' the lab, they normally have the results already.

Good luck!

zoe4life · Mar 26, 2008

Nadine,

I would do exactly what you are doing...treat her like you are presently and wait for the genetics to come back. It really should only take about a week, some people say a lot longer, but I have found that if you call your doctors office about a week after having it done and request them to actually 'call' the lab, they normally have the results already.

Good luck!

zoe4life · Mar 26, 2008

Nadine,

I would do exactly what you are doing...treat her like you are presently and wait for the genetics to come back. It really should only take about a week, some people say a lot longer, but I have found that if you call your doctors office about a week after having it done and request them to actually 'call' the lab, they normally have the results already.

Good luck!

zoe4life · Mar 26, 2008

Nadine,

I would do exactly what you are doing...treat her like you are presently and wait for the genetics to come back. It really should only take about a week, some people say a lot longer, but I have found that if you call your doctors office about a week after having it done and request them to actually 'call' the lab, they normally have the results already.

Good luck!

zoe4life · Mar 26, 2008

Nadine,
 
 I would do exactly what you are doing...treat her like you are presently and wait for the genetics to come back. It really should only take about a week, some people say a lot longer, but I have found that if you call your doctors office about a week after having it done and request them to actually 'call' the lab, they normally have the results already.
 
 Good luck!

blopunky13 · Mar 26, 2008

hey-I know as a parent anything is worrisome, even a cold. After you get the test results, if they are negative I really would go for more in depth testing, just to be sure. My son has alot of digestive issues which alot of people don't realize go hand in hand with respiratory issues. You know your child better than anyone, go with your instincts-you cannot know to much about your childs health. Good luck to you and never feel like you have to defend your right to be a parent.

blopunky13 · Mar 26, 2008

hey-I know as a parent anything is worrisome, even a cold. After you get the test results, if they are negative I really would go for more in depth testing, just to be sure. My son has alot of digestive issues which alot of people don't realize go hand in hand with respiratory issues. You know your child better than anyone, go with your instincts-you cannot know to much about your childs health. Good luck to you and never feel like you have to defend your right to be a parent.

blopunky13 · Mar 26, 2008

hey-I know as a parent anything is worrisome, even a cold. After you get the test results, if they are negative I really would go for more in depth testing, just to be sure. My son has alot of digestive issues which alot of people don't realize go hand in hand with respiratory issues. You know your child better than anyone, go with your instincts-you cannot know to much about your childs health. Good luck to you and never feel like you have to defend your right to be a parent.

blopunky13 · Mar 26, 2008

hey-I know as a parent anything is worrisome, even a cold. After you get the test results, if they are negative I really would go for more in depth testing, just to be sure. My son has alot of digestive issues which alot of people don't realize go hand in hand with respiratory issues. You know your child better than anyone, go with your instincts-you cannot know to much about your childs health. Good luck to you and never feel like you have to defend your right to be a parent.

blopunky13 · Mar 26, 2008

hey-I know as a parent anything is worrisome, even a cold. After you get the test results, if they are negative I really would go for more in depth testing, just to be sure. My son has alot of digestive issues which alot of people don't realize go hand in hand with respiratory issues. You know your child better than anyone, go with your instincts-you cannot know to much about your childs health. Good luck to you and never feel like you have to defend your right to be a parent.

I am so confused!

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