confused

alteregojenny · Sep 30, 2007

Hi! I've been on here before, and was having my baby boy tested for CF. The gastroenterologist said it was "negative" but wouldn't give me the numbers (we had a sweat test done). I really don't like this doctor, and I am thinking of switching. Anyhow....he's still having major lung issues, even though we got moved to a new house on our military base. He's also still small (20lbs at 14.5 mo. old), and the gastro put him on a concentrated formula/high fat/high calorie diet a few months ago. I've only seen 1/2 lb. gain in the last 2 months despite the amount of food this kid can pack away. I don't want to disbelieve the doctor, because no one wants to find out tht their child has a serious health problem, but at the same time I still have a feeling it's possible that he does have CF. Other than getting a second opinion (still going through medical insurance red tape on that one) does anyone know of any other medical issue that might present this way? His history includes apnea, 4 bouts of pneumonia, chronic cough, and GERD with failure-to-thrive. He's only 14.5 months old.

alteregojenny · Sep 30, 2007

Hi! I've been on here before, and was having my baby boy tested for CF. The gastroenterologist said it was "negative" but wouldn't give me the numbers (we had a sweat test done). I really don't like this doctor, and I am thinking of switching. Anyhow....he's still having major lung issues, even though we got moved to a new house on our military base. He's also still small (20lbs at 14.5 mo. old), and the gastro put him on a concentrated formula/high fat/high calorie diet a few months ago. I've only seen 1/2 lb. gain in the last 2 months despite the amount of food this kid can pack away. I don't want to disbelieve the doctor, because no one wants to find out tht their child has a serious health problem, but at the same time I still have a feeling it's possible that he does have CF. Other than getting a second opinion (still going through medical insurance red tape on that one) does anyone know of any other medical issue that might present this way? His history includes apnea, 4 bouts of pneumonia, chronic cough, and GERD with failure-to-thrive. He's only 14.5 months old.

alteregojenny · Sep 30, 2007

Hi! I've been on here before, and was having my baby boy tested for CF. The gastroenterologist said it was "negative" but wouldn't give me the numbers (we had a sweat test done). I really don't like this doctor, and I am thinking of switching. Anyhow....he's still having major lung issues, even though we got moved to a new house on our military base. He's also still small (20lbs at 14.5 mo. old), and the gastro put him on a concentrated formula/high fat/high calorie diet a few months ago. I've only seen 1/2 lb. gain in the last 2 months despite the amount of food this kid can pack away. I don't want to disbelieve the doctor, because no one wants to find out tht their child has a serious health problem, but at the same time I still have a feeling it's possible that he does have CF. Other than getting a second opinion (still going through medical insurance red tape on that one) does anyone know of any other medical issue that might present this way? His history includes apnea, 4 bouts of pneumonia, chronic cough, and GERD with failure-to-thrive. He's only 14.5 months old.

alteregojenny · Sep 30, 2007

Hi! I've been on here before, and was having my baby boy tested for CF. The gastroenterologist said it was "negative" but wouldn't give me the numbers (we had a sweat test done). I really don't like this doctor, and I am thinking of switching. Anyhow....he's still having major lung issues, even though we got moved to a new house on our military base. He's also still small (20lbs at 14.5 mo. old), and the gastro put him on a concentrated formula/high fat/high calorie diet a few months ago. I've only seen 1/2 lb. gain in the last 2 months despite the amount of food this kid can pack away. I don't want to disbelieve the doctor, because no one wants to find out tht their child has a serious health problem, but at the same time I still have a feeling it's possible that he does have CF. Other than getting a second opinion (still going through medical insurance red tape on that one) does anyone know of any other medical issue that might present this way? His history includes apnea, 4 bouts of pneumonia, chronic cough, and GERD with failure-to-thrive. He's only 14.5 months old.

alteregojenny · Sep 30, 2007

Hi! I've been on here before, and was having my baby boy tested for CF. The gastroenterologist said it was "negative" but wouldn't give me the numbers (we had a sweat test done). I really don't like this doctor, and I am thinking of switching. Anyhow....he's still having major lung issues, even though we got moved to a new house on our military base. He's also still small (20lbs at 14.5 mo. old), and the gastro put him on a concentrated formula/high fat/high calorie diet a few months ago. I've only seen 1/2 lb. gain in the last 2 months despite the amount of food this kid can pack away. I don't want to disbelieve the doctor, because no one wants to find out tht their child has a serious health problem, but at the same time I still have a feeling it's possible that he does have CF. Other than getting a second opinion (still going through medical insurance red tape on that one) does anyone know of any other medical issue that might present this way? His history includes apnea, 4 bouts of pneumonia, chronic cough, and GERD with failure-to-thrive. He's only 14.5 months old.

lightNlife · Sep 30, 2007

I'm so sorry you're having this frustration. Sweat tests used to be the "gold standard' when it comes to diagnosing CF, but really genetic testing is the only definitive way to go. You mentioned you're on a military base...which one?

I can't think of anything else that would present the way you described. I hope you get some answers soon. Perhaps someone else here on the forums can help you with more information. Hang in there. We're pulling for you.

lightNlife · Sep 30, 2007

I'm so sorry you're having this frustration. Sweat tests used to be the "gold standard' when it comes to diagnosing CF, but really genetic testing is the only definitive way to go. You mentioned you're on a military base...which one?

I can't think of anything else that would present the way you described. I hope you get some answers soon. Perhaps someone else here on the forums can help you with more information. Hang in there. We're pulling for you.

lightNlife · Sep 30, 2007

I'm so sorry you're having this frustration. Sweat tests used to be the "gold standard' when it comes to diagnosing CF, but really genetic testing is the only definitive way to go. You mentioned you're on a military base...which one?

I can't think of anything else that would present the way you described. I hope you get some answers soon. Perhaps someone else here on the forums can help you with more information. Hang in there. We're pulling for you.

lightNlife · Sep 30, 2007

I'm so sorry you're having this frustration. Sweat tests used to be the "gold standard' when it comes to diagnosing CF, but really genetic testing is the only definitive way to go. You mentioned you're on a military base...which one?

I can't think of anything else that would present the way you described. I hope you get some answers soon. Perhaps someone else here on the forums can help you with more information. Hang in there. We're pulling for you.

lightNlife · Sep 30, 2007

I'm so sorry you're having this frustration. Sweat tests used to be the "gold standard' when it comes to diagnosing CF, but really genetic testing is the only definitive way to go. You mentioned you're on a military base...which one?

I can't think of anything else that would present the way you described. I hope you get some answers soon. Perhaps someone else here on the forums can help you with more information. Hang in there. We're pulling for you.

JazzysMom · Sep 30, 2007

When they put him on the high concentrated/high calorie diet, how did it affect his stools? Did they prescribe any enzymes to help digest this new diet?

Without an actual # from the sweat test you cant even figure out if its borderline or not, but as Lauren mentioned even with a # the sweat test is not the gold standard anymore.

It seems to be the starting point because its cheapest. PUSH for the # from the sweat test and a genetic panel. I would hate to see lung damage done that could have been prevented with general maintenance.

HUGS & keep us updated.

JazzysMom · Sep 30, 2007

When they put him on the high concentrated/high calorie diet, how did it affect his stools? Did they prescribe any enzymes to help digest this new diet?

Without an actual # from the sweat test you cant even figure out if its borderline or not, but as Lauren mentioned even with a # the sweat test is not the gold standard anymore.

It seems to be the starting point because its cheapest. PUSH for the # from the sweat test and a genetic panel. I would hate to see lung damage done that could have been prevented with general maintenance.

HUGS & keep us updated.

JazzysMom · Sep 30, 2007

When they put him on the high concentrated/high calorie diet, how did it affect his stools? Did they prescribe any enzymes to help digest this new diet?

Without an actual # from the sweat test you cant even figure out if its borderline or not, but as Lauren mentioned even with a # the sweat test is not the gold standard anymore.

It seems to be the starting point because its cheapest. PUSH for the # from the sweat test and a genetic panel. I would hate to see lung damage done that could have been prevented with general maintenance.

HUGS & keep us updated.

JazzysMom · Sep 30, 2007

When they put him on the high concentrated/high calorie diet, how did it affect his stools? Did they prescribe any enzymes to help digest this new diet?

Without an actual # from the sweat test you cant even figure out if its borderline or not, but as Lauren mentioned even with a # the sweat test is not the gold standard anymore.

It seems to be the starting point because its cheapest. PUSH for the # from the sweat test and a genetic panel. I would hate to see lung damage done that could have been prevented with general maintenance.

HUGS & keep us updated.

JazzysMom · Sep 30, 2007

When they put him on the high concentrated/high calorie diet, how did it affect his stools? Did they prescribe any enzymes to help digest this new diet?

Without an actual # from the sweat test you cant even figure out if its borderline or not, but as Lauren mentioned even with a # the sweat test is not the gold standard anymore.

It seems to be the starting point because its cheapest. PUSH for the # from the sweat test and a genetic panel. I would hate to see lung damage done that could have been prevented with general maintenance.

HUGS & keep us updated.

alteregojenny · Sep 30, 2007

Hmm, how did it affect his stools...well, he goes more now that ever, and they're extra smelly. That's about all I've noticed. They did not prescribe enzymes for him, and I wondered if they were supposed to or not. As I mentioned, I don't particularly like this doctor.

We're seeing her again in November, and if her office were closer to home I'd try to schedule it sooner. I get very quickly overwhelmed in her office because she's so fast paced. Barely asks any questions at all, rushes through everything and leaves me standing there waiting for a nurse to come and re-explain everything for me. I've tried calling, but I have to jump a million hoops to leave a message, and then it still takes days to weeks to hear back, and it's usually not even the doctor, usually a nurse who doesn't actually know the answer to my question. (why do they call me then??)

We are seeing the pediatrician in a few weeks and I plan to talk more to her about this, and ask if maybe she got a copy of the sweat test results, because I'm genuinely thinking of having the test redone, or seeing if my medical insurance will cover doing a genetic panel on him.

Please, if anyone else knows of something that presents like this, I'd really like to know.

alteregojenny · Sep 30, 2007

Hmm, how did it affect his stools...well, he goes more now that ever, and they're extra smelly. That's about all I've noticed. They did not prescribe enzymes for him, and I wondered if they were supposed to or not. As I mentioned, I don't particularly like this doctor.

We're seeing her again in November, and if her office were closer to home I'd try to schedule it sooner. I get very quickly overwhelmed in her office because she's so fast paced. Barely asks any questions at all, rushes through everything and leaves me standing there waiting for a nurse to come and re-explain everything for me. I've tried calling, but I have to jump a million hoops to leave a message, and then it still takes days to weeks to hear back, and it's usually not even the doctor, usually a nurse who doesn't actually know the answer to my question. (why do they call me then??)

We are seeing the pediatrician in a few weeks and I plan to talk more to her about this, and ask if maybe she got a copy of the sweat test results, because I'm genuinely thinking of having the test redone, or seeing if my medical insurance will cover doing a genetic panel on him.

Please, if anyone else knows of something that presents like this, I'd really like to know.

alteregojenny · Sep 30, 2007

Hmm, how did it affect his stools...well, he goes more now that ever, and they're extra smelly. That's about all I've noticed. They did not prescribe enzymes for him, and I wondered if they were supposed to or not. As I mentioned, I don't particularly like this doctor.

We're seeing her again in November, and if her office were closer to home I'd try to schedule it sooner. I get very quickly overwhelmed in her office because she's so fast paced. Barely asks any questions at all, rushes through everything and leaves me standing there waiting for a nurse to come and re-explain everything for me. I've tried calling, but I have to jump a million hoops to leave a message, and then it still takes days to weeks to hear back, and it's usually not even the doctor, usually a nurse who doesn't actually know the answer to my question. (why do they call me then??)

We are seeing the pediatrician in a few weeks and I plan to talk more to her about this, and ask if maybe she got a copy of the sweat test results, because I'm genuinely thinking of having the test redone, or seeing if my medical insurance will cover doing a genetic panel on him.

Please, if anyone else knows of something that presents like this, I'd really like to know.

alteregojenny · Sep 30, 2007

Hmm, how did it affect his stools...well, he goes more now that ever, and they're extra smelly. That's about all I've noticed. They did not prescribe enzymes for him, and I wondered if they were supposed to or not. As I mentioned, I don't particularly like this doctor.

We're seeing her again in November, and if her office were closer to home I'd try to schedule it sooner. I get very quickly overwhelmed in her office because she's so fast paced. Barely asks any questions at all, rushes through everything and leaves me standing there waiting for a nurse to come and re-explain everything for me. I've tried calling, but I have to jump a million hoops to leave a message, and then it still takes days to weeks to hear back, and it's usually not even the doctor, usually a nurse who doesn't actually know the answer to my question. (why do they call me then??)

We are seeing the pediatrician in a few weeks and I plan to talk more to her about this, and ask if maybe she got a copy of the sweat test results, because I'm genuinely thinking of having the test redone, or seeing if my medical insurance will cover doing a genetic panel on him.

Please, if anyone else knows of something that presents like this, I'd really like to know.

alteregojenny · Sep 30, 2007

Hmm, how did it affect his stools...well, he goes more now that ever, and they're extra smelly. That's about all I've noticed. They did not prescribe enzymes for him, and I wondered if they were supposed to or not. As I mentioned, I don't particularly like this doctor.

We're seeing her again in November, and if her office were closer to home I'd try to schedule it sooner. I get very quickly overwhelmed in her office because she's so fast paced. Barely asks any questions at all, rushes through everything and leaves me standing there waiting for a nurse to come and re-explain everything for me. I've tried calling, but I have to jump a million hoops to leave a message, and then it still takes days to weeks to hear back, and it's usually not even the doctor, usually a nurse who doesn't actually know the answer to my question. (why do they call me then??)

We are seeing the pediatrician in a few weeks and I plan to talk more to her about this, and ask if maybe she got a copy of the sweat test results, because I'm genuinely thinking of having the test redone, or seeing if my medical insurance will cover doing a genetic panel on him.

Please, if anyone else knows of something that presents like this, I'd really like to know.

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