I think I might be crazy - UPDATE

sunflower72

New member
The sweat test was very low - he tested at 6 and 7. Turns out he has a bad case of reflux. Thank you for all of your support!

**********************************
Sorry for the long post - please tell me I am worrying over nothing.

My son has not been tested for CF, and no doctor has ever suggested that he be tested. It has been nagging at me, though, since he was 12 months old. I know that PA does not screen for CF, but that many hospitals do. I have no idea if my son was screened. I have switched peds three times, and I have seen all the records. There are no screening test results. I asked the first two peds, and they both told me that no news is good news. My husband has CF in his family, but neither of us went for genetic testing. My OB thought we should just know - even if it would not change anything. Now I am starting to think she was right.

Most of the posts that I read talk about digestive issues. Can CF present with only breathing issues when the person is young?

I am worried b/c my son is almost five and very small (5th percentile). He started in the 95th percentile at birth. By 12 months I think he was in the 25th to 50th. He was in the 10th to 25th percentile at his 4 year checkup in January. He eats, although I would not say he is a great eater. Some days he eats a lot, and some days he does not. He drinks a lot - mostly water or grape juice diluted 50%. He also started having breathing problems when he was about 12 months. He gets pneumonia very easily and was officially diagnosed with asthma last year and has been on medications. He had been much better - until we hit the fall and he went back to school. He is on a lot of medications - 4 puffs of Qvar and 4-6 of Xopenex every day - and he is still having issues. He does not test positive for fall allergies, though, so the asthma specialist had his adenoids x-rayed. They are normal. So - if he "just" has asthma, why are the medications not working? Why is he worse than ever? And why is he still not growing much?

His bowel movements are fine, and he does not seem "salty". He had reflux as a baby and some stool issues - but he seems OK now. He is very pale and sweats a lot. I have a younger son also, and they sleep in the same room. My younger son does not sweat anywhere near as much as the older one at night or when running around. Also, the older one is always cold. My older son was anemic when he was a baby. The pediatrican just stopped testing him. I never said anything because the blood tests were such a nightmare and he seemed fine.

Would you be worried about CF? If so, it is easier for me to get tested to see if I am a carrier than to have my son tested? Can I do that privately?

Thank you for enduring my long late night post.
 

sunflower72

New member
The sweat test was very low - he tested at 6 and 7. Turns out he has a bad case of reflux. Thank you for all of your support!

**********************************
Sorry for the long post - please tell me I am worrying over nothing.

My son has not been tested for CF, and no doctor has ever suggested that he be tested. It has been nagging at me, though, since he was 12 months old. I know that PA does not screen for CF, but that many hospitals do. I have no idea if my son was screened. I have switched peds three times, and I have seen all the records. There are no screening test results. I asked the first two peds, and they both told me that no news is good news. My husband has CF in his family, but neither of us went for genetic testing. My OB thought we should just know - even if it would not change anything. Now I am starting to think she was right.

Most of the posts that I read talk about digestive issues. Can CF present with only breathing issues when the person is young?

I am worried b/c my son is almost five and very small (5th percentile). He started in the 95th percentile at birth. By 12 months I think he was in the 25th to 50th. He was in the 10th to 25th percentile at his 4 year checkup in January. He eats, although I would not say he is a great eater. Some days he eats a lot, and some days he does not. He drinks a lot - mostly water or grape juice diluted 50%. He also started having breathing problems when he was about 12 months. He gets pneumonia very easily and was officially diagnosed with asthma last year and has been on medications. He had been much better - until we hit the fall and he went back to school. He is on a lot of medications - 4 puffs of Qvar and 4-6 of Xopenex every day - and he is still having issues. He does not test positive for fall allergies, though, so the asthma specialist had his adenoids x-rayed. They are normal. So - if he "just" has asthma, why are the medications not working? Why is he worse than ever? And why is he still not growing much?

His bowel movements are fine, and he does not seem "salty". He had reflux as a baby and some stool issues - but he seems OK now. He is very pale and sweats a lot. I have a younger son also, and they sleep in the same room. My younger son does not sweat anywhere near as much as the older one at night or when running around. Also, the older one is always cold. My older son was anemic when he was a baby. The pediatrican just stopped testing him. I never said anything because the blood tests were such a nightmare and he seemed fine.

Would you be worried about CF? If so, it is easier for me to get tested to see if I am a carrier than to have my son tested? Can I do that privately?

Thank you for enduring my long late night post.
 

sunflower72

New member
The sweat test was very low - he tested at 6 and 7. Turns out he has a bad case of reflux. Thank you for all of your support!

**********************************
Sorry for the long post - please tell me I am worrying over nothing.

My son has not been tested for CF, and no doctor has ever suggested that he be tested. It has been nagging at me, though, since he was 12 months old. I know that PA does not screen for CF, but that many hospitals do. I have no idea if my son was screened. I have switched peds three times, and I have seen all the records. There are no screening test results. I asked the first two peds, and they both told me that no news is good news. My husband has CF in his family, but neither of us went for genetic testing. My OB thought we should just know - even if it would not change anything. Now I am starting to think she was right.

Most of the posts that I read talk about digestive issues. Can CF present with only breathing issues when the person is young?

I am worried b/c my son is almost five and very small (5th percentile). He started in the 95th percentile at birth. By 12 months I think he was in the 25th to 50th. He was in the 10th to 25th percentile at his 4 year checkup in January. He eats, although I would not say he is a great eater. Some days he eats a lot, and some days he does not. He drinks a lot - mostly water or grape juice diluted 50%. He also started having breathing problems when he was about 12 months. He gets pneumonia very easily and was officially diagnosed with asthma last year and has been on medications. He had been much better - until we hit the fall and he went back to school. He is on a lot of medications - 4 puffs of Qvar and 4-6 of Xopenex every day - and he is still having issues. He does not test positive for fall allergies, though, so the asthma specialist had his adenoids x-rayed. They are normal. So - if he "just" has asthma, why are the medications not working? Why is he worse than ever? And why is he still not growing much?

His bowel movements are fine, and he does not seem "salty". He had reflux as a baby and some stool issues - but he seems OK now. He is very pale and sweats a lot. I have a younger son also, and they sleep in the same room. My younger son does not sweat anywhere near as much as the older one at night or when running around. Also, the older one is always cold. My older son was anemic when he was a baby. The pediatrican just stopped testing him. I never said anything because the blood tests were such a nightmare and he seemed fine.

Would you be worried about CF? If so, it is easier for me to get tested to see if I am a carrier than to have my son tested? Can I do that privately?

Thank you for enduring my long late night post.
 

sunflower72

New member
The sweat test was very low - he tested at 6 and 7. Turns out he has a bad case of reflux. Thank you for all of your support!

**********************************
Sorry for the long post - please tell me I am worrying over nothing.

My son has not been tested for CF, and no doctor has ever suggested that he be tested. It has been nagging at me, though, since he was 12 months old. I know that PA does not screen for CF, but that many hospitals do. I have no idea if my son was screened. I have switched peds three times, and I have seen all the records. There are no screening test results. I asked the first two peds, and they both told me that no news is good news. My husband has CF in his family, but neither of us went for genetic testing. My OB thought we should just know - even if it would not change anything. Now I am starting to think she was right.

Most of the posts that I read talk about digestive issues. Can CF present with only breathing issues when the person is young?

I am worried b/c my son is almost five and very small (5th percentile). He started in the 95th percentile at birth. By 12 months I think he was in the 25th to 50th. He was in the 10th to 25th percentile at his 4 year checkup in January. He eats, although I would not say he is a great eater. Some days he eats a lot, and some days he does not. He drinks a lot - mostly water or grape juice diluted 50%. He also started having breathing problems when he was about 12 months. He gets pneumonia very easily and was officially diagnosed with asthma last year and has been on medications. He had been much better - until we hit the fall and he went back to school. He is on a lot of medications - 4 puffs of Qvar and 4-6 of Xopenex every day - and he is still having issues. He does not test positive for fall allergies, though, so the asthma specialist had his adenoids x-rayed. They are normal. So - if he "just" has asthma, why are the medications not working? Why is he worse than ever? And why is he still not growing much?

His bowel movements are fine, and he does not seem "salty". He had reflux as a baby and some stool issues - but he seems OK now. He is very pale and sweats a lot. I have a younger son also, and they sleep in the same room. My younger son does not sweat anywhere near as much as the older one at night or when running around. Also, the older one is always cold. My older son was anemic when he was a baby. The pediatrican just stopped testing him. I never said anything because the blood tests were such a nightmare and he seemed fine.

Would you be worried about CF? If so, it is easier for me to get tested to see if I am a carrier than to have my son tested? Can I do that privately?

Thank you for enduring my long late night post.
 

sunflower72

New member
The sweat test was very low - he tested at 6 and 7. Turns out he has a bad case of reflux. Thank you for all of your support!

**********************************
Sorry for the long post - please tell me I am worrying over nothing.

My son has not been tested for CF, and no doctor has ever suggested that he be tested. It has been nagging at me, though, since he was 12 months old. I know that PA does not screen for CF, but that many hospitals do. I have no idea if my son was screened. I have switched peds three times, and I have seen all the records. There are no screening test results. I asked the first two peds, and they both told me that no news is good news. My husband has CF in his family, but neither of us went for genetic testing. My OB thought we should just know - even if it would not change anything. Now I am starting to think she was right.

Most of the posts that I read talk about digestive issues. Can CF present with only breathing issues when the person is young?

I am worried b/c my son is almost five and very small (5th percentile). He started in the 95th percentile at birth. By 12 months I think he was in the 25th to 50th. He was in the 10th to 25th percentile at his 4 year checkup in January. He eats, although I would not say he is a great eater. Some days he eats a lot, and some days he does not. He drinks a lot - mostly water or grape juice diluted 50%. He also started having breathing problems when he was about 12 months. He gets pneumonia very easily and was officially diagnosed with asthma last year and has been on medications. He had been much better - until we hit the fall and he went back to school. He is on a lot of medications - 4 puffs of Qvar and 4-6 of Xopenex every day - and he is still having issues. He does not test positive for fall allergies, though, so the asthma specialist had his adenoids x-rayed. They are normal. So - if he "just" has asthma, why are the medications not working? Why is he worse than ever? And why is he still not growing much?

His bowel movements are fine, and he does not seem "salty". He had reflux as a baby and some stool issues - but he seems OK now. He is very pale and sweats a lot. I have a younger son also, and they sleep in the same room. My younger son does not sweat anywhere near as much as the older one at night or when running around. Also, the older one is always cold. My older son was anemic when he was a baby. The pediatrican just stopped testing him. I never said anything because the blood tests were such a nightmare and he seemed fine.

Would you be worried about CF? If so, it is easier for me to get tested to see if I am a carrier than to have my son tested? Can I do that privately?

Thank you for enduring my long late night post.
 
A

Aspiemom

Guest
I think I might be crazy

I think you need to find a doctor who listens to you and get your son tested. If you just get yourself tested, you will still wonder if your son has it, so I would go ahead and get him tested. I would make sure they don't just do the sweat test, but that they do the blood test to send to Ambry. Many times the sweat test is not accurate.

Yes, they can just present breathing issues and not the pancreatic, it would depend on which CF genes they have.

Let us know what happens! And you're not crazy! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aspiemom

Guest
I think I might be crazy

I think you need to find a doctor who listens to you and get your son tested. If you just get yourself tested, you will still wonder if your son has it, so I would go ahead and get him tested. I would make sure they don't just do the sweat test, but that they do the blood test to send to Ambry. Many times the sweat test is not accurate.

Yes, they can just present breathing issues and not the pancreatic, it would depend on which CF genes they have.

Let us know what happens! And you're not crazy! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aspiemom

Guest
I think I might be crazy

I think you need to find a doctor who listens to you and get your son tested. If you just get yourself tested, you will still wonder if your son has it, so I would go ahead and get him tested. I would make sure they don't just do the sweat test, but that they do the blood test to send to Ambry. Many times the sweat test is not accurate.

Yes, they can just present breathing issues and not the pancreatic, it would depend on which CF genes they have.

Let us know what happens! And you're not crazy! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aspiemom

Guest
I think I might be crazy

I think you need to find a doctor who listens to you and get your son tested. If you just get yourself tested, you will still wonder if your son has it, so I would go ahead and get him tested. I would make sure they don't just do the sweat test, but that they do the blood test to send to Ambry. Many times the sweat test is not accurate.

Yes, they can just present breathing issues and not the pancreatic, it would depend on which CF genes they have.

Let us know what happens! And you're not crazy! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

Aspiemom

Guest
I think I might be crazy

I think you need to find a doctor who listens to you and get your son tested. If you just get yourself tested, you will still wonder if your son has it, so I would go ahead and get him tested. I would make sure they don't just do the sweat test, but that they do the blood test to send to Ambry. Many times the sweat test is not accurate.

Yes, they can just present breathing issues and not the pancreatic, it would depend on which CF genes they have.

Let us know what happens! And you're not crazy! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

Mommafirst

Guest
I think I might be crazy

I know you are scared, and I know you are hoping for people around here to tell you "Lady you are crazy, no way your kid has CF." I doubt you'll get that answer, but take it with a grain of salt (ha ha no pun intended) because everyone around here HAS seen a positive diagnosis.

Here's my thoughts: If you are worried, you are the mom and you have every right to demand testing. It is completely possible to present with lung issues and no pancreatic ones, but please know that the "atypical" presentations will most likely not show up on a sweat test alone. So as the pp said, consider having blood work done too.

I hope your son is just dealing with asthma (though even that can be quite difficult). Good luck and let us know how the testing goes.
 
M

Mommafirst

Guest
I think I might be crazy

I know you are scared, and I know you are hoping for people around here to tell you "Lady you are crazy, no way your kid has CF." I doubt you'll get that answer, but take it with a grain of salt (ha ha no pun intended) because everyone around here HAS seen a positive diagnosis.

Here's my thoughts: If you are worried, you are the mom and you have every right to demand testing. It is completely possible to present with lung issues and no pancreatic ones, but please know that the "atypical" presentations will most likely not show up on a sweat test alone. So as the pp said, consider having blood work done too.

I hope your son is just dealing with asthma (though even that can be quite difficult). Good luck and let us know how the testing goes.
 
M

Mommafirst

Guest
I think I might be crazy

I know you are scared, and I know you are hoping for people around here to tell you "Lady you are crazy, no way your kid has CF." I doubt you'll get that answer, but take it with a grain of salt (ha ha no pun intended) because everyone around here HAS seen a positive diagnosis.

Here's my thoughts: If you are worried, you are the mom and you have every right to demand testing. It is completely possible to present with lung issues and no pancreatic ones, but please know that the "atypical" presentations will most likely not show up on a sweat test alone. So as the pp said, consider having blood work done too.

I hope your son is just dealing with asthma (though even that can be quite difficult). Good luck and let us know how the testing goes.
 
M

Mommafirst

Guest
I think I might be crazy

I know you are scared, and I know you are hoping for people around here to tell you "Lady you are crazy, no way your kid has CF." I doubt you'll get that answer, but take it with a grain of salt (ha ha no pun intended) because everyone around here HAS seen a positive diagnosis.

Here's my thoughts: If you are worried, you are the mom and you have every right to demand testing. It is completely possible to present with lung issues and no pancreatic ones, but please know that the "atypical" presentations will most likely not show up on a sweat test alone. So as the pp said, consider having blood work done too.

I hope your son is just dealing with asthma (though even that can be quite difficult). Good luck and let us know how the testing goes.
 
M

Mommafirst

Guest
I think I might be crazy

I know you are scared, and I know you are hoping for people around here to tell you "Lady you are crazy, no way your kid has CF." I doubt you'll get that answer, but take it with a grain of salt (ha ha no pun intended) because everyone around here HAS seen a positive diagnosis.

Here's my thoughts: If you are worried, you are the mom and you have every right to demand testing. It is completely possible to present with lung issues and no pancreatic ones, but please know that the "atypical" presentations will most likely not show up on a sweat test alone. So as the pp said, consider having blood work done too.

I hope your son is just dealing with asthma (though even that can be quite difficult). Good luck and let us know how the testing goes.
 

JORDYSMOM

New member
I think I might be crazy

Hi there. I am the mom of a CFer who wasn't dx until he was 15 yo. Why? Because "he just has asthma and allergies." Because "It will improve as he gets older." Because "he LOOKS too healthy!" Blah blah blah! I listened to those docs and didn't follow my instincts.

Honestly, I wanted to believe all of what they said. I was told I was just looking for something to be wrong with him. My son didn't have pancriatic involvement when he was a baby. He was in the 75th percentile of height and weight. He only had lung and sinus problems. They weren't even willing to officially dx him as asthmatic until he was 5 yo. Before that, it was just bronchitis/pneumonia caused by severe allergies. Elevate his bed, have him sleep in his car seat.

Follow your mommy instincts! I hope you don't find anything; I really do. If you don't, no harm done. If you do, you can start the proper treatments. My son is the healthiest he's ever been since his dx. CF is a progressive disease. If jyou child is "Atypical" and "mild" like my son, the symptoms might not be so obvious right now, but they will be eventually. Push for the genetic test. I wish you the best of luck. Please keep us posted.

Stacey
 

JORDYSMOM

New member
I think I might be crazy

Hi there. I am the mom of a CFer who wasn't dx until he was 15 yo. Why? Because "he just has asthma and allergies." Because "It will improve as he gets older." Because "he LOOKS too healthy!" Blah blah blah! I listened to those docs and didn't follow my instincts.

Honestly, I wanted to believe all of what they said. I was told I was just looking for something to be wrong with him. My son didn't have pancriatic involvement when he was a baby. He was in the 75th percentile of height and weight. He only had lung and sinus problems. They weren't even willing to officially dx him as asthmatic until he was 5 yo. Before that, it was just bronchitis/pneumonia caused by severe allergies. Elevate his bed, have him sleep in his car seat.

Follow your mommy instincts! I hope you don't find anything; I really do. If you don't, no harm done. If you do, you can start the proper treatments. My son is the healthiest he's ever been since his dx. CF is a progressive disease. If jyou child is "Atypical" and "mild" like my son, the symptoms might not be so obvious right now, but they will be eventually. Push for the genetic test. I wish you the best of luck. Please keep us posted.

Stacey
 

JORDYSMOM

New member
I think I might be crazy

Hi there. I am the mom of a CFer who wasn't dx until he was 15 yo. Why? Because "he just has asthma and allergies." Because "It will improve as he gets older." Because "he LOOKS too healthy!" Blah blah blah! I listened to those docs and didn't follow my instincts.

Honestly, I wanted to believe all of what they said. I was told I was just looking for something to be wrong with him. My son didn't have pancriatic involvement when he was a baby. He was in the 75th percentile of height and weight. He only had lung and sinus problems. They weren't even willing to officially dx him as asthmatic until he was 5 yo. Before that, it was just bronchitis/pneumonia caused by severe allergies. Elevate his bed, have him sleep in his car seat.

Follow your mommy instincts! I hope you don't find anything; I really do. If you don't, no harm done. If you do, you can start the proper treatments. My son is the healthiest he's ever been since his dx. CF is a progressive disease. If jyou child is "Atypical" and "mild" like my son, the symptoms might not be so obvious right now, but they will be eventually. Push for the genetic test. I wish you the best of luck. Please keep us posted.

Stacey
 

JORDYSMOM

New member
I think I might be crazy

Hi there. I am the mom of a CFer who wasn't dx until he was 15 yo. Why? Because "he just has asthma and allergies." Because "It will improve as he gets older." Because "he LOOKS too healthy!" Blah blah blah! I listened to those docs and didn't follow my instincts.

Honestly, I wanted to believe all of what they said. I was told I was just looking for something to be wrong with him. My son didn't have pancriatic involvement when he was a baby. He was in the 75th percentile of height and weight. He only had lung and sinus problems. They weren't even willing to officially dx him as asthmatic until he was 5 yo. Before that, it was just bronchitis/pneumonia caused by severe allergies. Elevate his bed, have him sleep in his car seat.

Follow your mommy instincts! I hope you don't find anything; I really do. If you don't, no harm done. If you do, you can start the proper treatments. My son is the healthiest he's ever been since his dx. CF is a progressive disease. If jyou child is "Atypical" and "mild" like my son, the symptoms might not be so obvious right now, but they will be eventually. Push for the genetic test. I wish you the best of luck. Please keep us posted.

Stacey
 

JORDYSMOM

New member
I think I might be crazy

Hi there. I am the mom of a CFer who wasn't dx until he was 15 yo. Why? Because "he just has asthma and allergies." Because "It will improve as he gets older." Because "he LOOKS too healthy!" Blah blah blah! I listened to those docs and didn't follow my instincts.

Honestly, I wanted to believe all of what they said. I was told I was just looking for something to be wrong with him. My son didn't have pancriatic involvement when he was a baby. He was in the 75th percentile of height and weight. He only had lung and sinus problems. They weren't even willing to officially dx him as asthmatic until he was 5 yo. Before that, it was just bronchitis/pneumonia caused by severe allergies. Elevate his bed, have him sleep in his car seat.

Follow your mommy instincts! I hope you don't find anything; I really do. If you don't, no harm done. If you do, you can start the proper treatments. My son is the healthiest he's ever been since his dx. CF is a progressive disease. If jyou child is "Atypical" and "mild" like my son, the symptoms might not be so obvious right now, but they will be eventually. Push for the genetic test. I wish you the best of luck. Please keep us posted.

Stacey
 
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