questions about symptoms in toddler

[amndmnk]

hello,
I am sure you have had lots of moms (dads) asking the same thing, so I apologize if it is redundant. I have begun to wonder about CF in my 18 month old son, I hope you won't mind reading about him and offering your thoughts.
He has never had any kind of pulmonary infection or problem. He has been failure to thrive since he was born. Right now he is in the 4th weight percentile and 8th height percentile, with a delayed bone age. His poop was frequently full of mucus until he was 8 months old, at which point he became horribly constipated and has been since then. I feed him many many calories and he gains nothing. I do not see any type of mucus or oil in his diapers anymore, but he is always constipated so maybe I wouldn't? He had a full panel of tests done at a GI doc including malabsorption, not sure of the specifc tests but all were normal.
His poop has a very distinctive bitter odor. he is still mostly bottle fed due to developmental delays and sensory integration issues....and i do add some oils for fat and calories.
I noticed that recently his sinuses are always full. i am constantly sucking out white or clear not very thick mucus with the bulb syringe. Now my 6 month old is having the same thing, and this morning I noticed his poop looked a little oily. He poops a lot of mucus as well. He has horrible gas constantly. They both passed a newborn screen in Colorado.
The 18 month old has other issues like global developmental delay and underdeveloped optic nerves. Everyone is baffled. He tastes salty sometimes. He has a little cough off and on, had his lungs listened to and no issues. I believe he has severe food sensitivities but that doesn't explain why he won't grow.
I will end up getting them tested to ease my mind of the doc agrees. But I was hoping anyone might have some insight, especially about the poop factor. thanks so much, Amanda
 

 

[amndmnk]

hello,
I am sure you have had lots of moms (dads) asking the same thing, so I apologize if it is redundant. I have begun to wonder about CF in my 18 month old son, I hope you won't mind reading about him and offering your thoughts.
He has never had any kind of pulmonary infection or problem. He has been failure to thrive since he was born. Right now he is in the 4th weight percentile and 8th height percentile, with a delayed bone age. His poop was frequently full of mucus until he was 8 months old, at which point he became horribly constipated and has been since then. I feed him many many calories and he gains nothing. I do not see any type of mucus or oil in his diapers anymore, but he is always constipated so maybe I wouldn't? He had a full panel of tests done at a GI doc including malabsorption, not sure of the specifc tests but all were normal.
His poop has a very distinctive bitter odor. he is still mostly bottle fed due to developmental delays and sensory integration issues....and i do add some oils for fat and calories.
I noticed that recently his sinuses are always full. i am constantly sucking out white or clear not very thick mucus with the bulb syringe. Now my 6 month old is having the same thing, and this morning I noticed his poop looked a little oily. He poops a lot of mucus as well. He has horrible gas constantly. They both passed a newborn screen in Colorado.
The 18 month old has other issues like global developmental delay and underdeveloped optic nerves. Everyone is baffled. He tastes salty sometimes. He has a little cough off and on, had his lungs listened to and no issues. I believe he has severe food sensitivities but that doesn't explain why he won't grow.
I will end up getting them tested to ease my mind of the doc agrees. But I was hoping anyone might have some insight, especially about the poop factor. thanks so much, Amanda

 

[amndmnk]

<p>hello,
<p>I am sure you have had lots of moms (dads) asking the same thing, so I apologize if it is redundant. I have begun to wonder about CF in my 18 month old son, I hope you won't mind reading about him and offering your thoughts.
<p>He has never had any kind of pulmonary infection or problem. He has been failure to thrive since he was born. Right now he is in the 4th weight percentile and 8th height percentile, with a delayed bone age. His poop was frequently full of mucus until he was 8 months old, at which point he became horribly constipated and has been since then. I feed him many many calories and he gains nothing. I do not see any type of mucus or oil in his diapers anymore, but he is always constipated so maybe I wouldn't? He had a full panel of tests done at a GI doc including malabsorption, not sure of the specifc tests but all were normal.
<p>His poop has a very distinctive bitter odor. he is still mostly bottle fed due to developmental delays and sensory integration issues....and i do add some oils for fat and calories.
<p>I noticed that recently his sinuses are always full. i am constantly sucking out white or clear not very thick mucus with the bulb syringe. Now my 6 month old is having the same thing, and this morning I noticed his poop looked a little oily. He poops a lot of mucus as well. He has horrible gas constantly. They both passed a newborn screen in Colorado.
<p>The 18 month old has other issues like global developmental delay and underdeveloped optic nerves. Everyone is baffled. He tastes salty sometimes. He has a little cough off and on, had his lungs listened to and no issues. I believe he has severe food sensitivities but that doesn't explain why he won't grow.
<p>I will end up getting them tested to ease my mind of the doc agrees. But I was hoping anyone might have some insight, especially about the poop factor. thanks so much, Amanda
<p>

 

[amndmnk]

also....he seems to kind of gasp sometimes after he coughs. I am not sure if that would be wheezing or not?

 

[amndmnk]

also....he seems to kind of gasp sometimes after he coughs. I am not sure if that would be wheezing or not?

 

[amndmnk]

also....he seems to kind of gasp sometimes after he coughs. I am not sure if that would be wheezing or not?

 

[sdelorenzo]

Welcome. Sorry to hear your son is having so many issues. I am not sure about how likely it is to actually have cf once a child has passed the newborn screening. But, it wouldn't hurt to get your son or sons sweat tested. I know the doctor most likely won't be for the test as they would have already suggested it. So just be sure to be firm with the doctor in your requests.
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 2 and Paige, 7 months both without cf

 

[sdelorenzo]

Welcome. Sorry to hear your son is having so many issues. I am not sure about how likely it is to actually have cf once a child has passed the newborn screening. But, it wouldn't hurt to get your son or sons sweat tested. I know the doctor most likely won't be for the test as they would have already suggested it. So just be sure to be firm with the doctor in your requests.
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 2 and Paige, 7 months both without cf

 

[sdelorenzo]

Welcome. Sorry to hear your son is having so many issues. I am not sure about how likely it is to actually have cf once a child has passed the newborn screening. But, it wouldn't hurt to get your son or sons sweat tested. I know the doctor most likely won't be for the test as they would have already suggested it. So just be sure to be firm with the doctor in your requests.
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 2 and Paige, 7 months both without cf

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[LouLou]

Unless you need referrels for your insurance you don't need to ask your doctor for the test. After all you seriously don't want them running it for you. The science of cf testing has advanced so much in the last 10 years that peds can't be expected to keep up. Since they passed newborn screening they'll need genetically sequenced on top of sweat testing. Sequencing looks for over 1000 mutations. Avoid screens that look for only 100 or less. Sometimes the labs have a step up program...like first they look for 29 mutations, then 89 then sequence, then deletion and duplications. Each time getting more difficult and more expensive. After all if they have a common mutation that could be found in a screen why advance to the more detailed search. It's better to have it set up that they will look for it though if they don't find a common defect first. Look up on cff.org and set your son and other child up with an appt at an accredited cf center. It's certainly worth ruling it out. The cf doctor will copy your pediatrician with all the results. Here's an article about false negatives that comes from CO. Sorry to say but it's certainly possible and anyone that tries to stear you from doing the testing should 1) read this article and 2) put it in writing that they are denying you further testing for cystic fibrosis. http://cpj.sagepub.com/content/49/3/214.extract

 

[threebabies]

You should have your son's vitamin levels checked as well. If he is not absorbing properly he may not be getting important fat soluble vitamins. These vitamins are critical for his overall health and development.


Gina
Mom to Sophia 3 w/cf, Peter and Gavin 22 months w/cf. Df508 & py849x

 

[threebabies]

You should have your son's vitamin levels checked as well. If he is not absorbing properly he may not be getting important fat soluble vitamins. These vitamins are critical for his overall health and development.


Gina
Mom to Sophia 3 w/cf, Peter and Gavin 22 months w/cf. Df508 & py849x

 

[threebabies]

You should have your son's vitamin levels checked as well. If he is not absorbing properly he may not be getting important fat soluble vitamins. These vitamins are critical for his overall health and development.
<br />
<br />
<br />Gina
<br />Mom to Sophia 3 w/cf, Peter and Gavin 22 months w/cf. Df508 & py849x

 

[amndmnk]

ok. thank you for that info. I have asked repeatedly for a vitamin test....his pediatrician told me she would have to research it and they never called back. I also asked the endocrinologist about it and he did not seem willing to order it either.
We have since moved and have a new pediatrician. I am hoping we end up with some answers. I had read that article from searching false negatives. I just can't find any other reason why my son cannot gain any weight.
thanks, Amanda

 

[amndmnk]

ok. thank you for that info. I have asked repeatedly for a vitamin test....his pediatrician told me she would have to research it and they never called back. I also asked the endocrinologist about it and he did not seem willing to order it either.
We have since moved and have a new pediatrician. I am hoping we end up with some answers. I had read that article from searching false negatives. I just can't find any other reason why my son cannot gain any weight.
thanks, Amanda