Hi there John. I just joined this site a few minutes ago and will become more active soon. But for some reason your post came up. I am nanny to 5 yr old Matthew. He has CF and Celiac's Disease. Both diseases were diagnosed within a week of each other. Before we started all the testing, Matt's bowels were...ummmm...just downright nasty. Very loose, oily with orange fat, the smell from his bowel movements or just gas cleared the room within seconds, he couldn't gain weight, and ate nonstop day in day out. For us I guess it was a combination of both diseases working together but against Matthew. It took us a whole YEAR before his blood work came back negative for Celiac's. So don't expect to see too much of a change when you change her diet up for a few days. If she has Celiac's, it'll take a while to get her body back into shape w/out gluten. I can tell you this, though, and maybe it'll help you out. There have been a few times where we've gone to relatives and Matthew will 'sneak' a cracker or snack with wheat, even though he knows better. Sometimes he'll get a tummy ache, but I know he's been sneaking by his bowels the next day. They're right back to stinkin horribly and the oil will be present. And loose, of course. Just nasty. That takes another day to fix. If your daughter is neg for CF,and I truly pray she is, look into Celiac's. Unfortunately, the digestive issues with both diseases are so similar it's hard to tell. We had one doc checking for Celiac's and another doc checking for CF and damn both diseases turned up positive. Matt is now 100% gluten free and his CF is mild, knock on wood. I hope I helped some. Good luck!!
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- Thread starter NAVCHAPDOC
- Start date
<div class="FTQUOTE"><begin quote>Once I start to add fat back into her diet I will know for sure if she is passing fat/oil.</end quote></div>
You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
<div class="FTQUOTE"><begin quote>Once I start to add fat back into her diet I will know for sure if she is passing fat/oil.</end quote>
You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
<div class="FTQUOTE"><begin quote>Once I start to add fat back into her diet I will know for sure if she is passing fat/oil.</end quote>
<br />You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
<br />
<br />I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
<br />You may have a better idea, but I hesitate before wanting you to believe that this is something you can know for sure on your own. So many of us have been flummoxed by our kids issues for literally years... I just want to prepare you for the fact that sometimes what we see and try to figure out on our own can be really hard to figure out. I do hope though that as she resumes a normal diet it becomes more clear to you.
<br />
<br />I hope all the test results you are waiting for turn out to be helpful. Did she have the 72 hour fecal fat test done while she was having stools that are 'typical' for her and eating normally? What kind of genetic test was done? Some drs order panel tests (which will catch up to 100ish mutations), the best to get are genetic sequencing tests, as there are more than 1,500 mutations of the gene that cause this disease.
Harriet -
I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
Harriet -
I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
Harriet -
<br /> I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
<br /> I agree with you that sometimes playing detective and trying to figure everything out on our own can be a frustrating and sometimes even deceiving experience...just when you think you have something figured out, the ball game changes on ya! But Navchapdoc, I'm probably a lot like you and can't help myself from trying to figure things out by process of elimination and step-by-step logic. I'm a science major and that's the way we think! It's hard because as all parents know, we are ultimately our child's best advocate and detective. I just always prepare myself for the ball to trick me and fly the other way. Like you, we are still in the process of diagnosis after three long years...!!!
NAVCHAPDOC
New member
@ANGELM231,
" It took us a whole YEAR before his blood work came back negative for Celiac's"
I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
" It took us a whole YEAR before his blood work came back negative for Celiac's"
I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
NAVCHAPDOC
New member
@ANGELM231,
" It took us a whole YEAR before his blood work came back negative for Celiac's"
I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
" It took us a whole YEAR before his blood work came back negative for Celiac's"
I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
NAVCHAPDOC
New member
@ANGELM231,
<br />
<br /> " It took us a whole YEAR before his blood work came back negative for Celiac's"
<br />
<br /> I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
<br />
<br /> By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
<br />
<br />I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
<br />
<br /> We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
<br />
<br /> " It took us a whole YEAR before his blood work came back negative for Celiac's"
<br />
<br /> I am a bit confused. Matt does or does not have Celiac? Thanks for the reply by the way. The DNA pannel has yet to come back for the CF . It sould be another week or two. I am just one of those people that has to break everything down to its basics and start from the begining.
<br />
<br /> By removing anything that was not high in fiber, her bowels did form a bit better. They were more like little cakes -vs- wet/runny. They also did not smell near as bad. As of yesterday I started to add fat back into her diet. Good fat not trash food. I will inspect her diapers and make note of any changes. I can say this, even at there worst, her diapers never had what I would call orange/yellow/greesy/ they have always just been wet and unformed with a foul smell.
<br />
<br />I have never seen mucus other than a few little rice grain size pieces from time to time. Since we all have mucus in the GI tract this is not an unusual finding. In fact, had it not been for the pancreatitis x 2, it never crossed our mind to investigate it. As I mentioned in prior posts, with the exception of 3-4 URI's since about 1yr old she has never had any lung involvement.These did not require and hospital time and her brother was sick at the same time also. They both responded to a few days of treatment.
<br />
<br /> We have 2 GI specialists looking into it and no DX as of yet. As a Nurse, I can tell you that I have seen countless Dr.'s give a DX of something/anything just to move on to someone/something else. Just because the SX fit, DOES NOT MEAN THAT IS THE CORRECT DX. Let me give you an example. My son who is now 5 did not say his first word till 3yrs old, he did not have good eye contact as a baby/toddler, he did not walk till 15-16 months was not potty trained till 4 yrs old. His speach specialist said she felt he had some degree of autisum. It completly shut my wife and I's world down in about 2 seconds flat. I took to the internet and became a autisum expert in about a day. The more I read, the more SX fit him. We took him to several specialists that said he was a late bloomer and he would likely grow out of it. We did not agree and we took him to more specialists. They all said the same thing. Guess what, they were right. Today @ 5 yrs old, he is a non stop chatter box, fully toilet trained, has starring contests with us, fully functional. His speach is the only thing he has trouble with. We are working on it with the help of his teachers. My point is, dont ever stop believing that something else is going on until you are 110% sure. I conducted these food/stool tests so, if for nothing else, I would have more info for the Dr's. You can never know or have too much information.
We don't normally see a lot of mucus in Emily's stools either. The only time we've seen a lot of mucus is during the few times we've had to clean her out when she's developed blockages. Proper digestion is her issue. While fat is what is most obvious, pancreatic insufficiency affects absorption of protein and complex carbohydrates as well- impossible for us to detect in the stool itself. Emily was much healthier from a respiratory standpoint as an infant and young toddler than her now-11yr old brother, the one we know from genetic testing doesn't have cf. It took quite some time for her respiratory symptoms to start and this is very common.
I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
We don't normally see a lot of mucus in Emily's stools either. The only time we've seen a lot of mucus is during the few times we've had to clean her out when she's developed blockages. Proper digestion is her issue. While fat is what is most obvious, pancreatic insufficiency affects absorption of protein and complex carbohydrates as well- impossible for us to detect in the stool itself. Emily was much healthier from a respiratory standpoint as an infant and young toddler than her now-11yr old brother, the one we know from genetic testing doesn't have cf. It took quite some time for her respiratory symptoms to start and this is very common.
I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
We don't normally see a lot of mucus in Emily's stools either. The only time we've seen a lot of mucus is during the few times we've had to clean her out when she's developed blockages. Proper digestion is her issue. While fat is what is most obvious, pancreatic insufficiency affects absorption of protein and complex carbohydrates as well- impossible for us to detect in the stool itself. Emily was much healthier from a respiratory standpoint as an infant and young toddler than her now-11yr old brother, the one we know from genetic testing doesn't have cf. It took quite some time for her respiratory symptoms to start and this is very common.
<br />
<br />I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
<br />
<br />Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
<br />
<br />eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
<br />
<br />I agree with information gathering. I have always felt like knowledge is power and being informed about my kids (we've dealt with several different health concerns here) has been crucial, since you are right: if we are not their advocate, no one else will be. But in the world of diseases like CF, far too many parents here have learned that their kids will fall through the cracks, sometimes for years, if things aren't taken seriously enough. PLEASE count yourself fortunate that your child's doctor wants to be thorough in testing to rule this in or out (and hopefully it will just rule it out.) Many of us look back now and would have done anything to have doctors who would have been just a little more proactive or cooperative when we asked them and asked them and asked them what was wrong with our child or went through a parade of specialists to finally arrive at this dx.
<br />
<br />Again, I hope your child is fine. But given drs so often do not think of CF even when symptoms are flashing in big red lights suggesting it- please hear your dr out and see the testing through to be sure. <img src="i/expressions/rose.gif" border="0">
<br />
<br />eta> You also posted when telling us about her testing that your child didn't sweat enough for her test. Was this test conducted at an accredited lab? (Affiliated at a CF center) It's crucial that these tests are done at one of those labs, not just any lab. Do they have plans to repeat it in a few weeks? Make sure they do it on both arms; that will maximize odds of success as well.
NAVCHAPDOC
New member
@HMW,
The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
NAVCHAPDOC
New member
@HMW,
The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
NAVCHAPDOC
New member
@HMW,
<br />
<br />The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
<br />
<br />The sweat tests were done @ All Childrens hospital in St Pete, Fl. They are top ranked in the nation if not the world. They just could not get her to sweat. As for the DNA panel, all I know is that it was drawn by Quest. I am not sure how far they take the testing?? My daughter is doing much better. She is back to her normal self. I wanted her to recover completly before I did her stool collection (72 hr fecal fat, ect..) that way I know what her GI tract is doing on it's good days. The panel still has yet to come back. Thanks to everyone for the replies.
NAVCHAPDOC,
My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
NAVCHAPDOC,
My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
NAVCHAPDOC,
<br />My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
<br />Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
<br />Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
<br />Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
<br />My son had his amplified genetic test sent to quest. Quest's amplified test is very similar to the amby amplified. His results took 8 weeks to get back. I believe they also do just a smaller panel with 23 mutations as well. The amplified test does deletions and duplications and tests for over 1000 mutations. We thought we would never find an answer for our son until the doctor's ran this test. He was previously tested for 32 mutations and was negative.
<br />Before we went to his current doctor, we went to a different GI specialist who suspected pancreatic insufficiency. I was so desperate for answers that I brought in pictures of his poop!!! She immediately tested his fecal elastase and when that came back low, she started him on enzymes. I am not sure if I still have the photos but I will look. I would recommend you do the same thing. Take in those pictures. It solved a lot of our problems.
<br />Also are you lining the diaper with plastic? Just make sure you catch the grease. When my son was in diapers the liquid grease stuff was always absorbed. His stools were also so bulky that they filled the entire diaper and the poop would shoot up his back all the way up to his hair!!! Sorry if TMI. They were orange and very loose but not watery. Sometimes I would see mucus in clumps throughout the daiper. We started to potty train after enzymes so I have no toilet bowl advise. A few times I have seen an orange film in the toilet that floats over the top of the water. I have also seen it shred apart in the water.
<br />Hope this helps and that you get your answers soon. The best advice someone gave me when we were trying to get a diagnosis was to never second guess myself and to keep pushing. It actually got to the point where we left the CF center we were at to go somewhere better. Keep us posted and I hope you have peace very soon with all of this!
Re. All Children's: going purely 'by the numbers' compiled by the CFF care center data, they have statistics above national average, well above most of the other centers in FL. They are one of the 2 transplant centers in the state. So you are very fortunate to have access to care at such a great center! However, they do not have the top statistics in the country.
Re. Quest's genetic test, they really need to update their main webpage that shows up in Google searches to reflect the fact that their test can identify 99ish% of the 1,700 mutations that have been identified... not just 1,000. One of their main page makes their test look rather inferior compared to Genzyme or Mayo, when in fact it's superior to either of those since it does offer the option of deletion & duplication testing.
The Quest page that shows up on Google (I've seen this several times):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html">Quest CF Complete</a>
What the test really is capable of:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_CysticFibrosisComplete.htm">Cystic Fibrosis Complete Rare Mutation Analysis, Entire Gene Sequence</a> I was quite impressed to see this. I had no idea they offered such a comprehensive test, having only seen the link I posted first in the past. None of the genetic sequencing tests (not even Ambry) can detect all the mutations buried in the introns. I wonder how many base pairs in Quest goes when checking the introns (if they do at all.) Ambry goes something like 28...?
Re. Quest's genetic test, they really need to update their main webpage that shows up in Google searches to reflect the fact that their test can identify 99ish% of the 1,700 mutations that have been identified... not just 1,000. One of their main page makes their test look rather inferior compared to Genzyme or Mayo, when in fact it's superior to either of those since it does offer the option of deletion & duplication testing.
The Quest page that shows up on Google (I've seen this several times):
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/topics/cfcomplete/cfcomplete.html">Quest CF Complete</a>
What the test really is capable of:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_CysticFibrosisComplete.htm">Cystic Fibrosis Complete Rare Mutation Analysis, Entire Gene Sequence</a> I was quite impressed to see this. I had no idea they offered such a comprehensive test, having only seen the link I posted first in the past. None of the genetic sequencing tests (not even Ambry) can detect all the mutations buried in the introns. I wonder how many base pairs in Quest goes when checking the introns (if they do at all.) Ambry goes something like 28...?