update on my son

[camsmama]

hi everyone...i posted about a month and a half ago about my son who has had salty skin and growth problems. we got a sweat test done bc his weight is now in the 1st percentile...15 lbs 13 oz at 9 months! the dr left a msg saying the sweat test was "fine." and when we were at the testing site, the technician did an immediate result test with a little patch that had a "bulls eye" on it, and said it was negative.

has anyone else had this test? i haven't heard the official number, but the technician said it was within the yellow "negative" range. i want to be cautiously optimistic, but it's hard with so many chubby babies around and my lil guy barely on the charts!!

also, i know froggy mama, you said your friends' kids have had the sweat test for being small but tested negative. what ended up being wrong with them? were they just small babies?? my husband is really tall and NOT skinny <img src="i/expressions/face-icon-small-smile.gif" border="0"> and i'm pretty average. just doesn't seem like he should be quite that skinny!

anyway, we are operating for now on these negative results, but i just wanted to see if anyone would consider more testing? i haven't had any respiatory problems with him...just the occasional sound like he needs to clear his throat. ah! so many things to worry about. anyway, thank you all for your help!!

 

[camsmama]

hi everyone...i posted about a month and a half ago about my son who has had salty skin and growth problems. we got a sweat test done bc his weight is now in the 1st percentile...15 lbs 13 oz at 9 months! the dr left a msg saying the sweat test was "fine." and when we were at the testing site, the technician did an immediate result test with a little patch that had a "bulls eye" on it, and said it was negative.

has anyone else had this test? i haven't heard the official number, but the technician said it was within the yellow "negative" range. i want to be cautiously optimistic, but it's hard with so many chubby babies around and my lil guy barely on the charts!!

also, i know froggy mama, you said your friends' kids have had the sweat test for being small but tested negative. what ended up being wrong with them? were they just small babies?? my husband is really tall and NOT skinny <img src="i/expressions/face-icon-small-smile.gif" border="0"> and i'm pretty average. just doesn't seem like he should be quite that skinny!

anyway, we are operating for now on these negative results, but i just wanted to see if anyone would consider more testing? i haven't had any respiatory problems with him...just the occasional sound like he needs to clear his throat. ah! so many things to worry about. anyway, thank you all for your help!!

 

[camsmama]

hi everyone...i posted about a month and a half ago about my son who has had salty skin and growth problems. we got a sweat test done bc his weight is now in the 1st percentile...15 lbs 13 oz at 9 months! the dr left a msg saying the sweat test was "fine." and when we were at the testing site, the technician did an immediate result test with a little patch that had a "bulls eye" on it, and said it was negative.

has anyone else had this test? i haven't heard the official number, but the technician said it was within the yellow "negative" range. i want to be cautiously optimistic, but it's hard with so many chubby babies around and my lil guy barely on the charts!!

also, i know froggy mama, you said your friends' kids have had the sweat test for being small but tested negative. what ended up being wrong with them? were they just small babies?? my husband is really tall and NOT skinny <img src="i/expressions/face-icon-small-smile.gif" border="0"> and i'm pretty average. just doesn't seem like he should be quite that skinny!

anyway, we are operating for now on these negative results, but i just wanted to see if anyone would consider more testing? i haven't had any respiatory problems with him...just the occasional sound like he needs to clear his throat. ah! so many things to worry about. anyway, thank you all for your help!!

 

[camsmama]

hi everyone...i posted about a month and a half ago about my son who has had salty skin and growth problems. we got a sweat test done bc his weight is now in the 1st percentile...15 lbs 13 oz at 9 months! the dr left a msg saying the sweat test was "fine." and when we were at the testing site, the technician did an immediate result test with a little patch that had a "bulls eye" on it, and said it was negative.

has anyone else had this test? i haven't heard the official number, but the technician said it was within the yellow "negative" range. i want to be cautiously optimistic, but it's hard with so many chubby babies around and my lil guy barely on the charts!!

also, i know froggy mama, you said your friends' kids have had the sweat test for being small but tested negative. what ended up being wrong with them? were they just small babies?? my husband is really tall and NOT skinny <img src="i/expressions/face-icon-small-smile.gif" border="0"> and i'm pretty average. just doesn't seem like he should be quite that skinny!

anyway, we are operating for now on these negative results, but i just wanted to see if anyone would consider more testing? i haven't had any respiatory problems with him...just the occasional sound like he needs to clear his throat. ah! so many things to worry about. anyway, thank you all for your help!!

 

[camsmama]

hi everyone...i posted about a month and a half ago about my son who has had salty skin and growth problems. we got a sweat test done bc his weight is now in the 1st percentile...15 lbs 13 oz at 9 months! the dr left a msg saying the sweat test was "fine." and when we were at the testing site, the technician did an immediate result test with a little patch that had a "bulls eye" on it, and said it was negative.

has anyone else had this test? i haven't heard the official number, but the technician said it was within the yellow "negative" range. i want to be cautiously optimistic, but it's hard with so many chubby babies around and my lil guy barely on the charts!!

also, i know froggy mama, you said your friends' kids have had the sweat test for being small but tested negative. what ended up being wrong with them? were they just small babies?? my husband is really tall and NOT skinny <img src="i/expressions/face-icon-small-smile.gif" border="0"> and i'm pretty average. just doesn't seem like he should be quite that skinny!

anyway, we are operating for now on these negative results, but i just wanted to see if anyone would consider more testing? i haven't had any respiatory problems with him...just the occasional sound like he needs to clear his throat. ah! so many things to worry about. anyway, thank you all for your help!!

 

[Alyssa]

I would still be very skeptical about this, as many people here have "normal" sweat test numbers. Several things come to mind for me:

1) I've never heard of an "immediate" test -- it doesn't sound accurate to me, especially if you are dealing with a near normal number -- it might work great if you are off the charts high, but if it were me, I'd be skeptical -- they didn't collect any sweat from him? Doesn't sound like the "standard" test to me. A normal sweat test takes about 30 minutes or so - includes wiping an area on the arm, doing some sort of thing to stimulate sweating and placing a collection pad for sweat - usually the arm is wrapped in saran wrap and left to sweat - then all of this is removed - the pad is put into a jar to be sent to the lab for analysis.
2) Are you at an accredited CF center? This is a biggy - in order for a sweat test to be considered accurate, you need to be at an accredited center -- it's easy enough already to be mislead by sweat test results, you don't want to add to it by not having it done at an accredited center.
3) Have they done any fecal fat elastase testing? This would tell them if his pancreas is sending out digestive enzymes to the stomach for proper digestion - if not this would be the cause of little weight gain.

I'm just guessing here, but if you are just dealing with a regular pediatrician office, they may not have the specific CF experience to accurately diagnosis CF. If you aren't at an accredited CF center, you may be being mislead and can be wasting valuable time. If your son does have CF and he isn't digesting his food, he isn't getting the nutrition he needs - getting the correct diagnosis and treatment would change this - he will gain weight. The 1st percentile sounds very scary to me.

Please continue to ask for more testing and be sure to let us know what happens.

 

[Alyssa]

I would still be very skeptical about this, as many people here have "normal" sweat test numbers. Several things come to mind for me:

1) I've never heard of an "immediate" test -- it doesn't sound accurate to me, especially if you are dealing with a near normal number -- it might work great if you are off the charts high, but if it were me, I'd be skeptical -- they didn't collect any sweat from him? Doesn't sound like the "standard" test to me. A normal sweat test takes about 30 minutes or so - includes wiping an area on the arm, doing some sort of thing to stimulate sweating and placing a collection pad for sweat - usually the arm is wrapped in saran wrap and left to sweat - then all of this is removed - the pad is put into a jar to be sent to the lab for analysis.
2) Are you at an accredited CF center? This is a biggy - in order for a sweat test to be considered accurate, you need to be at an accredited center -- it's easy enough already to be mislead by sweat test results, you don't want to add to it by not having it done at an accredited center.
3) Have they done any fecal fat elastase testing? This would tell them if his pancreas is sending out digestive enzymes to the stomach for proper digestion - if not this would be the cause of little weight gain.

I'm just guessing here, but if you are just dealing with a regular pediatrician office, they may not have the specific CF experience to accurately diagnosis CF. If you aren't at an accredited CF center, you may be being mislead and can be wasting valuable time. If your son does have CF and he isn't digesting his food, he isn't getting the nutrition he needs - getting the correct diagnosis and treatment would change this - he will gain weight. The 1st percentile sounds very scary to me.

Please continue to ask for more testing and be sure to let us know what happens.

 

[Alyssa]

I would still be very skeptical about this, as many people here have "normal" sweat test numbers. Several things come to mind for me:

1) I've never heard of an "immediate" test -- it doesn't sound accurate to me, especially if you are dealing with a near normal number -- it might work great if you are off the charts high, but if it were me, I'd be skeptical -- they didn't collect any sweat from him? Doesn't sound like the "standard" test to me. A normal sweat test takes about 30 minutes or so - includes wiping an area on the arm, doing some sort of thing to stimulate sweating and placing a collection pad for sweat - usually the arm is wrapped in saran wrap and left to sweat - then all of this is removed - the pad is put into a jar to be sent to the lab for analysis.
2) Are you at an accredited CF center? This is a biggy - in order for a sweat test to be considered accurate, you need to be at an accredited center -- it's easy enough already to be mislead by sweat test results, you don't want to add to it by not having it done at an accredited center.
3) Have they done any fecal fat elastase testing? This would tell them if his pancreas is sending out digestive enzymes to the stomach for proper digestion - if not this would be the cause of little weight gain.

I'm just guessing here, but if you are just dealing with a regular pediatrician office, they may not have the specific CF experience to accurately diagnosis CF. If you aren't at an accredited CF center, you may be being mislead and can be wasting valuable time. If your son does have CF and he isn't digesting his food, he isn't getting the nutrition he needs - getting the correct diagnosis and treatment would change this - he will gain weight. The 1st percentile sounds very scary to me.

Please continue to ask for more testing and be sure to let us know what happens.

 

[Alyssa]

I would still be very skeptical about this, as many people here have "normal" sweat test numbers. Several things come to mind for me:

1) I've never heard of an "immediate" test -- it doesn't sound accurate to me, especially if you are dealing with a near normal number -- it might work great if you are off the charts high, but if it were me, I'd be skeptical -- they didn't collect any sweat from him? Doesn't sound like the "standard" test to me. A normal sweat test takes about 30 minutes or so - includes wiping an area on the arm, doing some sort of thing to stimulate sweating and placing a collection pad for sweat - usually the arm is wrapped in saran wrap and left to sweat - then all of this is removed - the pad is put into a jar to be sent to the lab for analysis.
2) Are you at an accredited CF center? This is a biggy - in order for a sweat test to be considered accurate, you need to be at an accredited center -- it's easy enough already to be mislead by sweat test results, you don't want to add to it by not having it done at an accredited center.
3) Have they done any fecal fat elastase testing? This would tell them if his pancreas is sending out digestive enzymes to the stomach for proper digestion - if not this would be the cause of little weight gain.

I'm just guessing here, but if you are just dealing with a regular pediatrician office, they may not have the specific CF experience to accurately diagnosis CF. If you aren't at an accredited CF center, you may be being mislead and can be wasting valuable time. If your son does have CF and he isn't digesting his food, he isn't getting the nutrition he needs - getting the correct diagnosis and treatment would change this - he will gain weight. The 1st percentile sounds very scary to me.

Please continue to ask for more testing and be sure to let us know what happens.

 

[Alyssa]

I would still be very skeptical about this, as many people here have "normal" sweat test numbers. Several things come to mind for me:

1) I've never heard of an "immediate" test -- it doesn't sound accurate to me, especially if you are dealing with a near normal number -- it might work great if you are off the charts high, but if it were me, I'd be skeptical -- they didn't collect any sweat from him? Doesn't sound like the "standard" test to me. A normal sweat test takes about 30 minutes or so - includes wiping an area on the arm, doing some sort of thing to stimulate sweating and placing a collection pad for sweat - usually the arm is wrapped in saran wrap and left to sweat - then all of this is removed - the pad is put into a jar to be sent to the lab for analysis.
2) Are you at an accredited CF center? This is a biggy - in order for a sweat test to be considered accurate, you need to be at an accredited center -- it's easy enough already to be mislead by sweat test results, you don't want to add to it by not having it done at an accredited center.
3) Have they done any fecal fat elastase testing? This would tell them if his pancreas is sending out digestive enzymes to the stomach for proper digestion - if not this would be the cause of little weight gain.

I'm just guessing here, but if you are just dealing with a regular pediatrician office, they may not have the specific CF experience to accurately diagnosis CF. If you aren't at an accredited CF center, you may be being mislead and can be wasting valuable time. If your son does have CF and he isn't digesting his food, he isn't getting the nutrition he needs - getting the correct diagnosis and treatment would change this - he will gain weight. The 1st percentile sounds very scary to me.

Please continue to ask for more testing and be sure to let us know what happens.

 

[momoffive]

I don't know a whole lot about the logistics of sweat tests and all that - but I have never heard of a quick test for the sweat test and I have read everything I can find about them as my son had a boderline result.

My pedi told me that my son's 37 was negative - he was under one at the time - which makes it a boderline. If I were you I would push HARD for a gentic test. AND to get the actual numbers for the sweat scores. I didn't push hard at first, but I regret it.

We just had the 40 mutation panel blood drawn yesterday. We are in wait mode. All I really had to do to get the test was be aggressive and pushy and NOT let them talk me out of it.

GL!!! 1% sounds scary to me too!

 

[momoffive]

I don't know a whole lot about the logistics of sweat tests and all that - but I have never heard of a quick test for the sweat test and I have read everything I can find about them as my son had a boderline result.

My pedi told me that my son's 37 was negative - he was under one at the time - which makes it a boderline. If I were you I would push HARD for a gentic test. AND to get the actual numbers for the sweat scores. I didn't push hard at first, but I regret it.

We just had the 40 mutation panel blood drawn yesterday. We are in wait mode. All I really had to do to get the test was be aggressive and pushy and NOT let them talk me out of it.

GL!!! 1% sounds scary to me too!

 

[momoffive]

I don't know a whole lot about the logistics of sweat tests and all that - but I have never heard of a quick test for the sweat test and I have read everything I can find about them as my son had a boderline result.

My pedi told me that my son's 37 was negative - he was under one at the time - which makes it a boderline. If I were you I would push HARD for a gentic test. AND to get the actual numbers for the sweat scores. I didn't push hard at first, but I regret it.

We just had the 40 mutation panel blood drawn yesterday. We are in wait mode. All I really had to do to get the test was be aggressive and pushy and NOT let them talk me out of it.

GL!!! 1% sounds scary to me too!

 

[momoffive]

I don't know a whole lot about the logistics of sweat tests and all that - but I have never heard of a quick test for the sweat test and I have read everything I can find about them as my son had a boderline result.

My pedi told me that my son's 37 was negative - he was under one at the time - which makes it a boderline. If I were you I would push HARD for a gentic test. AND to get the actual numbers for the sweat scores. I didn't push hard at first, but I regret it.

We just had the 40 mutation panel blood drawn yesterday. We are in wait mode. All I really had to do to get the test was be aggressive and pushy and NOT let them talk me out of it.

GL!!! 1% sounds scary to me too!

 

[momoffive]

I don't know a whole lot about the logistics of sweat tests and all that - but I have never heard of a quick test for the sweat test and I have read everything I can find about them as my son had a boderline result.

My pedi told me that my son's 37 was negative - he was under one at the time - which makes it a boderline. If I were you I would push HARD for a gentic test. AND to get the actual numbers for the sweat scores. I didn't push hard at first, but I regret it.

We just had the 40 mutation panel blood drawn yesterday. We are in wait mode. All I really had to do to get the test was be aggressive and pushy and NOT let them talk me out of it.

GL!!! 1% sounds scary to me too!

 

[momja]

Camsmama- My son was 15 lbs 12 oz at 9 months, and it continued to go downhill from there. I can understand that your dr's may be in a waiting period with weight checks to see if he comes back up but I think if there is something wrong it's much better catching it early.

What exactly was the sweat test number? I too have never heard of an immediate test and I don't believe it exists. My son has had 3 sweat tests so far all came back with not enough sweat and the technician said there is no other way to collect the sample.
You asked what else was done if growth was low. Well it all started at 9 months with us, we had a follow up weight check at 10 months then all the tests began.

Fecal fat test
Blood lab numbers
Thyroid, liver, pancreas
Allergy testing (still waiting results)
Pediatric blood panel
3 sweat tests
RX of Flovent 1 puff for night (just started)
70 gene CF mutation panel (negative)

We just went to a new Dr. for a second opinion. She agrees with all of it and has referred us to a GI. I believe we will try for another sweat test soon.
Unlike your son my son does exhibit CF like symptoms. He was almost 9 lbs at birth and at almost 16 months he has now just barely doubled his birth weight. I know how frustrating this is and feel free to talk if you need too.

 

[momja]

Camsmama- My son was 15 lbs 12 oz at 9 months, and it continued to go downhill from there. I can understand that your dr's may be in a waiting period with weight checks to see if he comes back up but I think if there is something wrong it's much better catching it early.

What exactly was the sweat test number? I too have never heard of an immediate test and I don't believe it exists. My son has had 3 sweat tests so far all came back with not enough sweat and the technician said there is no other way to collect the sample.
You asked what else was done if growth was low. Well it all started at 9 months with us, we had a follow up weight check at 10 months then all the tests began.

Fecal fat test
Blood lab numbers
Thyroid, liver, pancreas
Allergy testing (still waiting results)
Pediatric blood panel
3 sweat tests
RX of Flovent 1 puff for night (just started)
70 gene CF mutation panel (negative)

We just went to a new Dr. for a second opinion. She agrees with all of it and has referred us to a GI. I believe we will try for another sweat test soon.
Unlike your son my son does exhibit CF like symptoms. He was almost 9 lbs at birth and at almost 16 months he has now just barely doubled his birth weight. I know how frustrating this is and feel free to talk if you need too.

 

[momja]

Camsmama- My son was 15 lbs 12 oz at 9 months, and it continued to go downhill from there. I can understand that your dr's may be in a waiting period with weight checks to see if he comes back up but I think if there is something wrong it's much better catching it early.

What exactly was the sweat test number? I too have never heard of an immediate test and I don't believe it exists. My son has had 3 sweat tests so far all came back with not enough sweat and the technician said there is no other way to collect the sample.
You asked what else was done if growth was low. Well it all started at 9 months with us, we had a follow up weight check at 10 months then all the tests began.

Fecal fat test
Blood lab numbers
Thyroid, liver, pancreas
Allergy testing (still waiting results)
Pediatric blood panel
3 sweat tests
RX of Flovent 1 puff for night (just started)
70 gene CF mutation panel (negative)

We just went to a new Dr. for a second opinion. She agrees with all of it and has referred us to a GI. I believe we will try for another sweat test soon.
Unlike your son my son does exhibit CF like symptoms. He was almost 9 lbs at birth and at almost 16 months he has now just barely doubled his birth weight. I know how frustrating this is and feel free to talk if you need too.

 

[momja]

Camsmama- My son was 15 lbs 12 oz at 9 months, and it continued to go downhill from there. I can understand that your dr's may be in a waiting period with weight checks to see if he comes back up but I think if there is something wrong it's much better catching it early.

What exactly was the sweat test number? I too have never heard of an immediate test and I don't believe it exists. My son has had 3 sweat tests so far all came back with not enough sweat and the technician said there is no other way to collect the sample.
You asked what else was done if growth was low. Well it all started at 9 months with us, we had a follow up weight check at 10 months then all the tests began.

Fecal fat test
Blood lab numbers
Thyroid, liver, pancreas
Allergy testing (still waiting results)
Pediatric blood panel
3 sweat tests
RX of Flovent 1 puff for night (just started)
70 gene CF mutation panel (negative)

We just went to a new Dr. for a second opinion. She agrees with all of it and has referred us to a GI. I believe we will try for another sweat test soon.
Unlike your son my son does exhibit CF like symptoms. He was almost 9 lbs at birth and at almost 16 months he has now just barely doubled his birth weight. I know how frustrating this is and feel free to talk if you need too.

 

[momja]

Camsmama- My son was 15 lbs 12 oz at 9 months, and it continued to go downhill from there. I can understand that your dr's may be in a waiting period with weight checks to see if he comes back up but I think if there is something wrong it's much better catching it early.

What exactly was the sweat test number? I too have never heard of an immediate test and I don't believe it exists. My son has had 3 sweat tests so far all came back with not enough sweat and the technician said there is no other way to collect the sample.
You asked what else was done if growth was low. Well it all started at 9 months with us, we had a follow up weight check at 10 months then all the tests began.

Fecal fat test
Blood lab numbers
Thyroid, liver, pancreas
Allergy testing (still waiting results)
Pediatric blood panel
3 sweat tests
RX of Flovent 1 puff for night (just started)
70 gene CF mutation panel (negative)

We just went to a new Dr. for a second opinion. She agrees with all of it and has referred us to a GI. I believe we will try for another sweat test soon.
Unlike your son my son does exhibit CF like symptoms. He was almost 9 lbs at birth and at almost 16 months he has now just barely doubled his birth weight. I know how frustrating this is and feel free to talk if you need too.