mom2maxandcharlie
New member
Thanks everyone for the response! And Melissa, thanks for your poll information. May I ask...have you had any other CF symptoms (malabsorption, etc)?
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Sweat Chloride Test Poll
- Thread starter mom2maxandcharlie
- Start date
mom2maxandcharlie
New member
Thanks everyone for the response! And Melissa, thanks for your poll information. May I ask...have you had any other CF symptoms (malabsorption, etc)?
mom2maxandcharlie,
Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
Sorry that was TMI, I think I am pondering the issue as I type.
Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
Sorry that was TMI, I think I am pondering the issue as I type.
mom2maxandcharlie,
Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
Sorry that was TMI, I think I am pondering the issue as I type.
Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
Sorry that was TMI, I think I am pondering the issue as I type.
mom2maxandcharlie,
<br />Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
<br />There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
<br />I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
<br />Sorry that was TMI, I think I am pondering the issue as I type.
<br />Not really. When I have general check-ups, nothing nutrition-related in the bloodwork is off aside from high cholesterol and occasional borderline anemia. Nor have I ever had any digestive issue requiring medical attention apart from dehydration needing IV fluids due to stomach flus (only 2x, one of then during pregnancy).
<br />There is a link between bronchiectasis and inflammatory bowel disease (also rheumatoid arthritis), so I suspect my stomach issues are more along those lines.
<br />I go 4-5 times a day and cannot eat certain foods without violent bathroom trips. Also, I eat a lot to have a bmi around 19. I can eat fat just fine though, unless it is pepperoni or bacon. For me the issue is, I believe, a sensitivity to a bacteria that maybe other people are fine with? I donno. I just cannot eat lukewarm food from restaurants, Starbucks, salad bars, you name it, I get cramps and have to dash into whatever public bathroom might be available and hang out for while there. I also just empty out when I overeat, which happens because I get really hungry from emptying out. Makes sense...so when I am thoughtful, I graze steadily.
<br />Sorry that was TMI, I think I am pondering the issue as I type.
It's true we'd never have known about my son's 2 mutations if it weren't for my cf positive status. When he was born I wanted him genetically tested to make sure he didn't have a second mutation (since I have two he'd definitely be a carrier) from his dad. We only tested his dad for 89 mutations prior to conception. They said he still had a 1 in 500 chance of having cf.
The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
It's true we'd never have known about my son's 2 mutations if it weren't for my cf positive status. When he was born I wanted him genetically tested to make sure he didn't have a second mutation (since I have two he'd definitely be a carrier) from his dad. We only tested his dad for 89 mutations prior to conception. They said he still had a 1 in 500 chance of having cf.
The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
It's true we'd never have known about my son's 2 mutations if it weren't for my cf positive status. When he was born I wanted him genetically tested to make sure he didn't have a second mutation (since I have two he'd definitely be a carrier) from his dad. We only tested his dad for 89 mutations prior to conception. They said he still had a 1 in 500 chance of having cf.
<br />
<br />The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
<br />
<br />His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
<br />
<br />What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
<br />
<br />We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
<br />
<br />The center wanted to sweat test him. I said no let's just do genetic. We compromised on doing both in the same day since I do not like unnecessary trips to the hospital where I can pick up deadly bacteria. The center told me that often in cases like this they do find a second mutation and without the results of the sweat test they do not know if his CFTR is functioning or not.
<br />
<br />His results on sweat test at 8 wks old was 11 and a 12. Again, at age 2 they were 11 on both arms. His mutations are G551D and S1235R. It seems that with this combo he will always be PS, eventually, possibly have mild resp involvement and is at risk for pancreatitis. We are glad we know. He is followed now at Yale and is in the cf registry. Despite being 3 and still having no symptoms. Amen and thank you God!!
<br />
<br />What do we do for his cf? Well after 4 days of coughing we treat with antibiotics against mrsa. He cultures it probably from picking it up from my breastmilk sorry if TMI. We do vest about 4 times a week to keep him in the habit then when he's sick we do it 2-4 times a day..even just for sniffles. He gets all the standard cf testing..vitamin testing, annual lung xray, etc. We don't push for a label on what his cf is called but last time we brought it up with a doctor they said CFMD. Cystic Fibrosis Metabolic Disorder. We had an interesting discussion about how we would not be entering any such thing in his medical records since they are accessible to insurance and we want to keep insurance paying for ANYTHING we deem necessary for his case so in their eyes he has a cf diagnosis but in actuality he does not fit the cf diagnosis criteria. By the way, he also passed newborn screening.
<br />
<br />We are about to do a 3 day fecal fat elastase test though because I think his poop is looking more tan than dark brown lately and want to make sure he isn't malabsorbing. They are still sinking and there is no oil present or anything and very formed.
I am glad this question was asked and there have been so many responses. My daughter is now 5 months. She had an initial sweat test done @ 3 months that was borderline of 44. The second sweat test was done only 1 month later at a different hospital @ 4 months & it was 10. So the CF specialists do not believe she has cf because she also had the most common 100 mutation panel done & it came back normal. She recently had a Bronchoscopy, Endoscopy, & Sygmoidoscopy. The results were Bronc- 2 batcerias were cultured - Moraxella Catarrhalis & H. Flu. The End/Syg showed normal enzymes, high levels of eosinophils & inflammation in her Small Intestines & rectum.
My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
We are awaiting a full panel...
My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
We are awaiting a full panel...
I am glad this question was asked and there have been so many responses. My daughter is now 5 months. She had an initial sweat test done @ 3 months that was borderline of 44. The second sweat test was done only 1 month later at a different hospital @ 4 months & it was 10. So the CF specialists do not believe she has cf because she also had the most common 100 mutation panel done & it came back normal. She recently had a Bronchoscopy, Endoscopy, & Sygmoidoscopy. The results were Bronc- 2 batcerias were cultured - Moraxella Catarrhalis & H. Flu. The End/Syg showed normal enzymes, high levels of eosinophils & inflammation in her Small Intestines & rectum.
My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
We are awaiting a full panel...
My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
We are awaiting a full panel...
I am glad this question was asked and there have been so many responses. My daughter is now 5 months. She had an initial sweat test done @ 3 months that was borderline of 44. The second sweat test was done only 1 month later at a different hospital @ 4 months & it was 10. So the CF specialists do not believe she has cf because she also had the most common 100 mutation panel done & it came back normal. She recently had a Bronchoscopy, Endoscopy, & Sygmoidoscopy. The results were Bronc- 2 batcerias were cultured - Moraxella Catarrhalis & H. Flu. The End/Syg showed normal enzymes, high levels of eosinophils & inflammation in her Small Intestines & rectum.
<br />
<br />My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
<br />
<br />We are awaiting a full panel...
<br />
<br />My question(s) are, is it possible for her to have normal enzymes because of her age as well as the fact that she is on Neocate (an all elemental formula) and Prevacid 15mg? Also, are the two bacterias(found in lungs) found in cf patients? Last question, do any of you or someone you know have Chron's disease along with the diagnosis of cf?
<br />
<br />We are awaiting a full panel...
Maeflower-
First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.
First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.
Maeflower-
First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.
First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.
Maeflower-
<br /> First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
<br /> Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
<br /> We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.
<br /> First of all, I've been following your story and I whole-heartedly wish you the best in this whole frustrating dilemna. Hang in there!
<br /> Interesting you mention crohn's and colon inflammation. I have often wondered this myself because initially 3 years ago my daughter had episodes of colitis, GI infections, bleeding, and high levels of white blood cells upon colonoscopy biopsies. In addition, she has the typical foamy, pale, floating stool of CF. Stools float every time. I have often wondered if CF kids are more prone to GI infections of the colon. I know sticky mucus causes bacteria to harbor in the lungs - would it not make sense for sticky mucus in the intestines to harbor bacteria and infection too? They looked into crohn's with my daughter (understandable) and ruled it out, but sometimes I still wonder. From what I've heard, (but I might be totally wrong...) crohn's and CF are not really related much. But I'm no expert! Is your doctor suggesting crohn's...is that why you asked? Just curious.
<br /> We are waiting on results of genetic testing for CF. Good luck, again, to you and your precious daughter.