NEED POOP PICTURES PLEASE!

[NAVCHAPDOC]

Hello all. Thanks in advance. As I have mentioned in my prior posts, my wife and I have a 2 year old little girl with a few sx of CF. So far loose stool and 2 episodes of pancreatitis in the last 3 months. Nothing beyond that.

There is currently CF DNA blood being tested at the lab and pending stool studies. I was wondering if any of you parents out there have pics of the mucus / oily stools that you kids with confermed CF had PRIOR to enzyme treatment. She is not potty trained yet so by the time we inspect it, a lot of it has already been absorbed by the diaper.

I know it is pretty nasty but we are really desperate at this point. I was sort of shocked that the internet didnt do a better job with my search request for those pics which is why I am turning to you for help. Thank you in advance. Please E-mail them to me @ NAVCHAPDOC@HOTMAIL.COM

I will also be posting this request on a few other topic boards so sorry for the re-post!

Thanks again,
John

 

[NAVCHAPDOC]

Hello all. Thanks in advance. As I have mentioned in my prior posts, my wife and I have a 2 year old little girl with a few sx of CF. So far loose stool and 2 episodes of pancreatitis in the last 3 months. Nothing beyond that.

There is currently CF DNA blood being tested at the lab and pending stool studies. I was wondering if any of you parents out there have pics of the mucus / oily stools that you kids with confermed CF had PRIOR to enzyme treatment. She is not potty trained yet so by the time we inspect it, a lot of it has already been absorbed by the diaper.

I know it is pretty nasty but we are really desperate at this point. I was sort of shocked that the internet didnt do a better job with my search request for those pics which is why I am turning to you for help. Thank you in advance. Please E-mail them to me @ NAVCHAPDOC@HOTMAIL.COM

I will also be posting this request on a few other topic boards so sorry for the re-post!

Thanks again,
John

 

[NAVCHAPDOC]

Hello all. Thanks in advance. As I have mentioned in my prior posts, my wife and I have a 2 year old little girl with a few sx of CF. So far loose stool and 2 episodes of pancreatitis in the last 3 months. Nothing beyond that.
<br />
<br /> There is currently CF DNA blood being tested at the lab and pending stool studies. I was wondering if any of you parents out there have pics of the mucus / oily stools that you kids with confermed CF had PRIOR to enzyme treatment. She is not potty trained yet so by the time we inspect it, a lot of it has already been absorbed by the diaper.
<br />
<br /> I know it is pretty nasty but we are really desperate at this point. I was sort of shocked that the internet didnt do a better job with my search request for those pics which is why I am turning to you for help. Thank you in advance. Please E-mail them to me @ NAVCHAPDOC@HOTMAIL.COM
<br />
<br />I will also be posting this request on a few other topic boards so sorry for the re-post!
<br />
<br />Thanks again,
<br />John

 

[jmom]

Hi there! I replied to one of your other posts because I felt we are in somewhat similar situations. I'd love to be supportive to each other...we are both trying to figure out what is going on with our precious daughters but weeding through the symptoms can be sometimes a nebulus process in which I find myself questioning and second-guessing myself a lot. And sometimes, you just have to have a sense of humor! So let me enjoy the humor with you in asking for poop photos! In addition to floating, frothy stools and some bleeding, my daughter periodically has what looks like a bunch of white bubble bath floating on the surface of the water. I've asked doctors about it and they don't know much of what to say. Finally, I thought "I'm going to bring in a photo of this to her GI specialist." He was amused, but it was helpful because he had never seen anything like it before and now had a reference. I admit I felt looney bringing in a poop photo, but you do what you feel you need to do when it comes to your kids.
Regarding the look of a CF bowel movement, I, too, have often felt that this would be helpful to see a visual! Doc said she her biopsy came out negative for celiac's. My daughter had one confirmed test of fat malabsorption, and then the second test came out negative, so I'm a bit confused.

 

[jmom]

Hi there! I replied to one of your other posts because I felt we are in somewhat similar situations. I'd love to be supportive to each other...we are both trying to figure out what is going on with our precious daughters but weeding through the symptoms can be sometimes a nebulus process in which I find myself questioning and second-guessing myself a lot. And sometimes, you just have to have a sense of humor! So let me enjoy the humor with you in asking for poop photos! In addition to floating, frothy stools and some bleeding, my daughter periodically has what looks like a bunch of white bubble bath floating on the surface of the water. I've asked doctors about it and they don't know much of what to say. Finally, I thought "I'm going to bring in a photo of this to her GI specialist." He was amused, but it was helpful because he had never seen anything like it before and now had a reference. I admit I felt looney bringing in a poop photo, but you do what you feel you need to do when it comes to your kids.
Regarding the look of a CF bowel movement, I, too, have often felt that this would be helpful to see a visual! Doc said she her biopsy came out negative for celiac's. My daughter had one confirmed test of fat malabsorption, and then the second test came out negative, so I'm a bit confused.

 

[jmom]

Hi there! I replied to one of your other posts because I felt we are in somewhat similar situations. I'd love to be supportive to each other...we are both trying to figure out what is going on with our precious daughters but weeding through the symptoms can be sometimes a nebulus process in which I find myself questioning and second-guessing myself a lot. And sometimes, you just have to have a sense of humor! So let me enjoy the humor with you in asking for poop photos! In addition to floating, frothy stools and some bleeding, my daughter periodically has what looks like a bunch of white bubble bath floating on the surface of the water. I've asked doctors about it and they don't know much of what to say. Finally, I thought "I'm going to bring in a photo of this to her GI specialist." He was amused, but it was helpful because he had never seen anything like it before and now had a reference. I admit I felt looney bringing in a poop photo, but you do what you feel you need to do when it comes to your kids.
<br />Regarding the look of a CF bowel movement, I, too, have often felt that this would be helpful to see a visual! Doc said she her biopsy came out negative for celiac's. My daughter had one confirmed test of fat malabsorption, and then the second test came out negative, so I'm a bit confused.

 

[NAVCHAPDOC]

I know what you mean. The worst part of all of this for me is that there is really nothing that can say "yes it is" or "no it is not" Everything I hear from the Doctors in regards to the rule out or rule in tests are BS.

I have read post after post on this site and others that say their kids had neg sweat tests, neg blood tests and neg fecal tests and yet still have a DX of CF. I have taken this poop thing a step further. I cut out just about everything from my daughters diet except shredded mini wheat cereal (no milk) for stool bulk and lemonaide crystal lite. No juice, no milk, no snacks ect..I have been doing that for a few days now and it has firmed her stool some what. It is not cigar shaped but more like a small cow patty.

She is still in diapers so it is hard to really get a feel how it is truly shaped on the way out. Anyway, I then take a tongue blade and scrape as much as I can from the diaper and drop it in the toilet. I am looking for oil on the surface of the water and fat floating. I take it a step further and take a small stick and break it up in the bowel to see what I get. So far, no oil or fat shows up and it does sink within a few seconds. It does however break up pretty easily.

I am trying to avoid denial but I really don't agree with the CF route. I think there is something else GI going on that is causing her pancreatitis and loose/foul stool.I am a nurse and something is just not sitting right with me about calling this CF. This is why I was hoping to get some parents with CF kids to submitt there pre-enzyme poop pics. It would be a really goo reference for those of us on the fence of a DX. Best of luck with your daughter. Keep me (us) posted as to any new developments.
John

 

[NAVCHAPDOC]

I know what you mean. The worst part of all of this for me is that there is really nothing that can say "yes it is" or "no it is not" Everything I hear from the Doctors in regards to the rule out or rule in tests are BS.

I have read post after post on this site and others that say their kids had neg sweat tests, neg blood tests and neg fecal tests and yet still have a DX of CF. I have taken this poop thing a step further. I cut out just about everything from my daughters diet except shredded mini wheat cereal (no milk) for stool bulk and lemonaide crystal lite. No juice, no milk, no snacks ect..I have been doing that for a few days now and it has firmed her stool some what. It is not cigar shaped but more like a small cow patty.

She is still in diapers so it is hard to really get a feel how it is truly shaped on the way out. Anyway, I then take a tongue blade and scrape as much as I can from the diaper and drop it in the toilet. I am looking for oil on the surface of the water and fat floating. I take it a step further and take a small stick and break it up in the bowel to see what I get. So far, no oil or fat shows up and it does sink within a few seconds. It does however break up pretty easily.

I am trying to avoid denial but I really don't agree with the CF route. I think there is something else GI going on that is causing her pancreatitis and loose/foul stool.I am a nurse and something is just not sitting right with me about calling this CF. This is why I was hoping to get some parents with CF kids to submitt there pre-enzyme poop pics. It would be a really goo reference for those of us on the fence of a DX. Best of luck with your daughter. Keep me (us) posted as to any new developments.
John

 

[NAVCHAPDOC]

I know what you mean. The worst part of all of this for me is that there is really nothing that can say "yes it is" or "no it is not" Everything I hear from the Doctors in regards to the rule out or rule in tests are BS.
<br />
<br /> I have read post after post on this site and others that say their kids had neg sweat tests, neg blood tests and neg fecal tests and yet still have a DX of CF. I have taken this poop thing a step further. I cut out just about everything from my daughters diet except shredded mini wheat cereal (no milk) for stool bulk and lemonaide crystal lite. No juice, no milk, no snacks ect..I have been doing that for a few days now and it has firmed her stool some what. It is not cigar shaped but more like a small cow patty.
<br />
<br />She is still in diapers so it is hard to really get a feel how it is truly shaped on the way out. Anyway, I then take a tongue blade and scrape as much as I can from the diaper and drop it in the toilet. I am looking for oil on the surface of the water and fat floating. I take it a step further and take a small stick and break it up in the bowel to see what I get. So far, no oil or fat shows up and it does sink within a few seconds. It does however break up pretty easily.
<br />
<br /> I am trying to avoid denial but I really don't agree with the CF route. I think there is something else GI going on that is causing her pancreatitis and loose/foul stool.I am a nurse and something is just not sitting right with me about calling this CF. This is why I was hoping to get some parents with CF kids to submitt there pre-enzyme poop pics. It would be a really goo reference for those of us on the fence of a DX. Best of luck with your daughter. Keep me (us) posted as to any new developments.
<br />John

 

[hmw]

I would be careful with the poop experiment you are currently carrying out, since by only feeding her cereal and lemonade, your experiment isn't giving you results of how her digestive process is really working. For example, you won't see evidence of fat malabsorption if she isn't consuming any fat to digest in the first place. The only way you will see more accurate 'evidence' of proper digestion is if you feed her a NORMAL diet and then look at the poop.

I hope that more testing helps you get an accurate dx for your child. Thorough genetic testing (genetic sequencing (i.e. Ambry), not just a panel testing for a few of the 1500+ mutations), sweat testing, actual tests on the stool (fecal fat and fecal elastase) as well as looking at response to therapies targeted to treat cf (i.e. what happens to growth and digestive symptoms when enzymes are started? ) are all things that have to be looked at together when making a dx. Since sometimes one (or more) tests are inconclusive for many kids, the tests, symptoms and <i>clinical response to treatment</i> have to all be looked at together.

 

[hmw]

I would be careful with the poop experiment you are currently carrying out, since by only feeding her cereal and lemonade, your experiment isn't giving you results of how her digestive process is really working. For example, you won't see evidence of fat malabsorption if she isn't consuming any fat to digest in the first place. The only way you will see more accurate 'evidence' of proper digestion is if you feed her a NORMAL diet and then look at the poop.

I hope that more testing helps you get an accurate dx for your child. Thorough genetic testing (genetic sequencing (i.e. Ambry), not just a panel testing for a few of the 1500+ mutations), sweat testing, actual tests on the stool (fecal fat and fecal elastase) as well as looking at response to therapies targeted to treat cf (i.e. what happens to growth and digestive symptoms when enzymes are started? ) are all things that have to be looked at together when making a dx. Since sometimes one (or more) tests are inconclusive for many kids, the tests, symptoms and <i>clinical response to treatment</i> have to all be looked at together.

 

[hmw]

I would be careful with the poop experiment you are currently carrying out, since by only feeding her cereal and lemonade, your experiment isn't giving you results of how her digestive process is really working. For example, you won't see evidence of fat malabsorption if she isn't consuming any fat to digest in the first place. The only way you will see more accurate 'evidence' of proper digestion is if you feed her a NORMAL diet and then look at the poop.
<br />
<br />I hope that more testing helps you get an accurate dx for your child. Thorough genetic testing (genetic sequencing (i.e. Ambry), not just a panel testing for a few of the 1500+ mutations), sweat testing, actual tests on the stool (fecal fat and fecal elastase) as well as looking at response to therapies targeted to treat cf (i.e. what happens to growth and digestive symptoms when enzymes are started? ) are all things that have to be looked at together when making a dx. Since sometimes one (or more) tests are inconclusive for many kids, the tests, symptoms and <i>clinical response to treatment</i> have to all be looked at together.

 

[ktsmom]

While still in diapers, there was orange oil that separated out of the stool and was absorbed in obvious stripes at both side edges of the diaper. Once potty trained, there was orange oil floating on top of the water. Looked like the grease you would see in a pot of chili on the stove.

Blech, too much information and bad memories (even as obvious as her malabsorption was, we also fought to get a diagnosis). I am sorry for your daughter's hospitalizations and I know the DNA results can't come soon enough for you. I feel for you, searching so hard for answers. Hang in there.

 

[ktsmom]

While still in diapers, there was orange oil that separated out of the stool and was absorbed in obvious stripes at both side edges of the diaper. Once potty trained, there was orange oil floating on top of the water. Looked like the grease you would see in a pot of chili on the stove.

Blech, too much information and bad memories (even as obvious as her malabsorption was, we also fought to get a diagnosis). I am sorry for your daughter's hospitalizations and I know the DNA results can't come soon enough for you. I feel for you, searching so hard for answers. Hang in there.

 

[ktsmom]

While still in diapers, there was orange oil that separated out of the stool and was absorbed in obvious stripes at both side edges of the diaper. Once potty trained, there was orange oil floating on top of the water. Looked like the grease you would see in a pot of chili on the stove.
<br />
<br />Blech, too much information and bad memories (even as obvious as her malabsorption was, we also fought to get a diagnosis). I am sorry for your daughter's hospitalizations and I know the DNA results can't come soon enough for you. I feel for you, searching so hard for answers. Hang in there.

 

[NAVCHAPDOC]

Thanks for the replies. I have only put her on the high fiber and little to no fat diet for a few days to clear her bowels. This is the only way I can get an accurate assesment as to what her GI tract is doing. Once I start to add fat back into her diet I will know for sure if she is passing fat/oil. I needed a control study/base line to go by.

 

[NAVCHAPDOC]

Thanks for the replies. I have only put her on the high fiber and little to no fat diet for a few days to clear her bowels. This is the only way I can get an accurate assesment as to what her GI tract is doing. Once I start to add fat back into her diet I will know for sure if she is passing fat/oil. I needed a control study/base line to go by.

 

[NAVCHAPDOC]

Thanks for the replies. I have only put her on the high fiber and little to no fat diet for a few days to clear her bowels. This is the only way I can get an accurate assesment as to what her GI tract is doing. Once I start to add fat back into her diet I will know for sure if she is passing fat/oil. I needed a control study/base line to go by.

 

[angelm231]

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!!

 

[angelm231]

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!!