My 4 year old son has had 4 episodes of rectal prolapse in the last month and no other symptoms. I asked to have him tested for cf only because I found a relationship between rectal prolapse and cf while researching rp on the internet. My son's Dr. kinda poo-pooed the idea of testing him, but I pressed it and it was done. The sodium came back at 60 and the chloride was 62. The pediatrician contacted a cf specialist at Children's Hospital and the specialist said that the lack of symptoms and the low sweat test results didn't add up to cf. He said that children who present with rp usually have many other symptoms and a sodium chloride level in the 90's or higher. So we've taken another sweat test and will get the results sometime today. My question is, has anyone else ever heard of a child (or adult, for that matter) presenting like this? My son has always been above average in height and weight and has had no lung or sinus infections - not even a bad cough. No greasy stools, no extended diarrhea. A little constipation, but nothing out of the ordinary. Any ideas or comments?
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Does this make sense?
- Thread starter mbuehler
- Start date
My 4 year old son has had 4 episodes of rectal prolapse in the last month and no other symptoms. I asked to have him tested for cf only because I found a relationship between rectal prolapse and cf while researching rp on the internet. My son's Dr. kinda poo-pooed the idea of testing him, but I pressed it and it was done. The sodium came back at 60 and the chloride was 62. The pediatrician contacted a cf specialist at Children's Hospital and the specialist said that the lack of symptoms and the low sweat test results didn't add up to cf. He said that children who present with rp usually have many other symptoms and a sodium chloride level in the 90's or higher. So we've taken another sweat test and will get the results sometime today. My question is, has anyone else ever heard of a child (or adult, for that matter) presenting like this? My son has always been above average in height and weight and has had no lung or sinus infections - not even a bad cough. No greasy stools, no extended diarrhea. A little constipation, but nothing out of the ordinary. Any ideas or comments?
My 4 year old son has had 4 episodes of rectal prolapse in the last month and no other symptoms. I asked to have him tested for cf only because I found a relationship between rectal prolapse and cf while researching rp on the internet. My son's Dr. kinda poo-pooed the idea of testing him, but I pressed it and it was done. The sodium came back at 60 and the chloride was 62. The pediatrician contacted a cf specialist at Children's Hospital and the specialist said that the lack of symptoms and the low sweat test results didn't add up to cf. He said that children who present with rp usually have many other symptoms and a sodium chloride level in the 90's or higher. So we've taken another sweat test and will get the results sometime today. My question is, has anyone else ever heard of a child (or adult, for that matter) presenting like this? My son has always been above average in height and weight and has had no lung or sinus infections - not even a bad cough. No greasy stools, no extended diarrhea. A little constipation, but nothing out of the ordinary. Any ideas or comments?
A friend of mine's granddaughter who had constipation issues, was diagnosed when the peds doctor did a sweat test to "Rule out CF". She was almost 2 years old.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
A friend of mine's granddaughter who had constipation issues, was diagnosed when the peds doctor did a sweat test to "Rule out CF". She was almost 2 years old.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
A friend of mine's granddaughter who had constipation issues, was diagnosed when the peds doctor did a sweat test to "Rule out CF". She was almost 2 years old.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
I've heard of incorrect sweat tests in terms of it showing normal levels and the person actually having CF, but not the other way around. In fact my son passed his sweat test with flying colors -- normal 32; however, his blood tests showed otherwise. Currently he has more bowel issues caused by pancreatic insufficiency, than lung issues. His doctor explained that CFers are born with normal lungs; however, with increased infections, progression of the disease, eventually the lungs will be affected.
T
tammykrumrey
Guest
Ask for genetic testing instead of sweat testing. Or in addition to sweat testing. My older daughter had many rectal prolapses, and that is how we came about diagnosing her with CF. Rectal prolapses are just not that common in the U.S. and CF is definately something that needs to be ruled out. She did fail the sweat test, but it is not all that uncommon to pass the sweat test and still have CF-many on this sight have been in that exact situation.
T
tammykrumrey
Guest
Ask for genetic testing instead of sweat testing. Or in addition to sweat testing. My older daughter had many rectal prolapses, and that is how we came about diagnosing her with CF. Rectal prolapses are just not that common in the U.S. and CF is definately something that needs to be ruled out. She did fail the sweat test, but it is not all that uncommon to pass the sweat test and still have CF-many on this sight have been in that exact situation.
T
tammykrumrey
Guest
Ask for genetic testing instead of sweat testing. Or in addition to sweat testing. My older daughter had many rectal prolapses, and that is how we came about diagnosing her with CF. Rectal prolapses are just not that common in the U.S. and CF is definately something that needs to be ruled out. She did fail the sweat test, but it is not all that uncommon to pass the sweat test and still have CF-many on this sight have been in that exact situation.
I just found out from my Dad that a genetic disorder called hyperlipidemia runs in his side of the family. It raises the fat content in our blood streams and can actually cause pancreatitis, which I know cf is sometimes confused with prior to genetic testing. Regardless of how the latest sweat test turns out, I will be pressing for genetic testing, hopefully ruling out cf, but I'm not going to get my hopes up.
I just found out from my Dad that a genetic disorder called hyperlipidemia runs in his side of the family. It raises the fat content in our blood streams and can actually cause pancreatitis, which I know cf is sometimes confused with prior to genetic testing. Regardless of how the latest sweat test turns out, I will be pressing for genetic testing, hopefully ruling out cf, but I'm not going to get my hopes up.
I just found out from my Dad that a genetic disorder called hyperlipidemia runs in his side of the family. It raises the fat content in our blood streams and can actually cause pancreatitis, which I know cf is sometimes confused with prior to genetic testing. Regardless of how the latest sweat test turns out, I will be pressing for genetic testing, hopefully ruling out cf, but I'm not going to get my hopes up.
If you have time, read my full story on my blog (link below)
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
If you have time, read my full story on my blog (link below)
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
If you have time, read my full story on my blog (link below)
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
I'm a big fan of "borderline sweat test numbers need to be followed with genetic testing" because almost everyone presents with some CF symptoms and so many people report normal or borderline sweat test numbers but then are diagnosed with CF.
Your son may be the only exception I've heard of (just because he doesn't present with any other symptoms) Still I think it is very much worth pursuing full genetic testing.
Someone correct me if I'm wrong, but I thought the reason people with CF get rectal prolapse was because of malnutrition. If her son is good for height and weight would that mean the prolapse is not happening because of mal-absorption and therefore doesn't sound so much like CF ?
i think that usually in patients with cf the chloride to sodium ratio is a bit askew....something like 2:1 (ie 2 parts chloride to 1 part sodium) but i'm not really sure if this means anything or not. Also i agree with alyssa that rectal prolapse usually happens with malabsorption but am not positive either.
i think that usually in patients with cf the chloride to sodium ratio is a bit askew....something like 2:1 (ie 2 parts chloride to 1 part sodium) but i'm not really sure if this means anything or not. Also i agree with alyssa that rectal prolapse usually happens with malabsorption but am not positive either.
i think that usually in patients with cf the chloride to sodium ratio is a bit askew....something like 2:1 (ie 2 parts chloride to 1 part sodium) but i'm not really sure if this means anything or not. Also i agree with alyssa that rectal prolapse usually happens with malabsorption but am not positive either.
T
tammykrumrey
Guest
We were told that my daughters rectal prolapses were caused by malabsorbtion. She was at normal weight until she started eating more high fat foods at about the age of 1, although she ate all of the time. Seeing she was my first child, I foolishly thought that all babies drank a 6+ ounce bottle in one sitting at the age of TWO WEEKS (every 2 hours). Now I tease all my friends who had babies within a month of mine being born that I thought it was THEIR babies that were abnormal in drinking only about 2-3 ounces (every 3 hours) at the same age! She was simply not absorbing the vitamins and nutrients needed to keep those muscles around the rectum strong enough to hold it up, especially when having 10 bowel movements a day!
Anyways, I get passionate about it because it makes me angry that it was missed for so long...but it can be caused by malabsorbtion. I really thought Kayla looked really good, just very small and petite. But when I look at the pictures of her just prior to her dx and then again after enzymes and vitamins, I realize that she was simply not that healthy. She looked very pale and when naked, we always joked that she looked like ET, with the big belly and skinny legs and arms! Sometimes I feel so bad for it not even crossing my mind that she could possibly have CF because she had to go trough so much for a few years after losing that first 14 months of nutrients.
Anyways, I get passionate about it because it makes me angry that it was missed for so long...but it can be caused by malabsorbtion. I really thought Kayla looked really good, just very small and petite. But when I look at the pictures of her just prior to her dx and then again after enzymes and vitamins, I realize that she was simply not that healthy. She looked very pale and when naked, we always joked that she looked like ET, with the big belly and skinny legs and arms! Sometimes I feel so bad for it not even crossing my mind that she could possibly have CF because she had to go trough so much for a few years after losing that first 14 months of nutrients.
T
tammykrumrey
Guest
We were told that my daughters rectal prolapses were caused by malabsorbtion. She was at normal weight until she started eating more high fat foods at about the age of 1, although she ate all of the time. Seeing she was my first child, I foolishly thought that all babies drank a 6+ ounce bottle in one sitting at the age of TWO WEEKS (every 2 hours). Now I tease all my friends who had babies within a month of mine being born that I thought it was THEIR babies that were abnormal in drinking only about 2-3 ounces (every 3 hours) at the same age! She was simply not absorbing the vitamins and nutrients needed to keep those muscles around the rectum strong enough to hold it up, especially when having 10 bowel movements a day!
Anyways, I get passionate about it because it makes me angry that it was missed for so long...but it can be caused by malabsorbtion. I really thought Kayla looked really good, just very small and petite. But when I look at the pictures of her just prior to her dx and then again after enzymes and vitamins, I realize that she was simply not that healthy. She looked very pale and when naked, we always joked that she looked like ET, with the big belly and skinny legs and arms! Sometimes I feel so bad for it not even crossing my mind that she could possibly have CF because she had to go trough so much for a few years after losing that first 14 months of nutrients.
Anyways, I get passionate about it because it makes me angry that it was missed for so long...but it can be caused by malabsorbtion. I really thought Kayla looked really good, just very small and petite. But when I look at the pictures of her just prior to her dx and then again after enzymes and vitamins, I realize that she was simply not that healthy. She looked very pale and when naked, we always joked that she looked like ET, with the big belly and skinny legs and arms! Sometimes I feel so bad for it not even crossing my mind that she could possibly have CF because she had to go trough so much for a few years after losing that first 14 months of nutrients.