?? about GI probs as symptom

B

BrsMiney

New member
My son will be three yrs old in April. He has never had a respiratory infection of any kind... He has battled GI issues from birth though. Starting with severe "colic" but progressing to pain, constipation/diarrhea, rashes, and spitting-up that was too bad for the doctor to continue to write off.

So we were referred and put under the care of a pedi GI for his 1st 2 yrs. He was diagnosed as having GERD with no specific cause and GI food allergies to certain proteins (casein/milk, soy, peanut) even though antigen specific testing was negative.

We removed the offending foods from his diet and have had a much healthier and happier baby... (occassional reflux, but constipation/diarrhea and rashes only when a "bad" food accidentally slips in).

Also, he is a very picky eater and was sent to a SLP to determine if he had a swallowing malfunction, but he didn't--they determined he was just picky.

His weight dropped from the 70th to the 20-30th %ile at his 2 yr appt, but both pediatrician and pediatric GI doc were unconcerned since his growth was OK, he was healthy, and he is a picky eater (plus VERY active).

Fast forward to last week (almost a year). He started having recurring incidences of rectal prolapse. Pediatrician sent us to a surgeon. Surgeon tells us surgery not warranted, and it is most likely due to straining on the potty chair during potty training. But orders a genetic carrier screen for CF...

I got curious and called and asked why this was ordered, and was told it is routine in cases of rectal prolapse just to "rule out the atypical", but then I told the surgeon about the previous GI issues (which he wasn't really aware of since he'd never seen my son before), and he became somewhat (but not greatly) concerned, and told me that being a surgeon this was not his area of expertise, but he is going to make some phone calls and do some research and decide if a sweat test is warranted in this case. He will call me back next week.

Needless to say I am very concerned and on pins and needles.

<b>Does anyone think that my story sounds familiar? Could this medical history sound like a kid that has gone undx?? Or is it pretty far-fetched based on this scenario that we have a child with CF?</b>

Any advice etc would be very appreciated...

TIA,
-J
 
B

BrsMiney

New member
My son will be three yrs old in April. He has never had a respiratory infection of any kind... He has battled GI issues from birth though. Starting with severe "colic" but progressing to pain, constipation/diarrhea, rashes, and spitting-up that was too bad for the doctor to continue to write off.

So we were referred and put under the care of a pedi GI for his 1st 2 yrs. He was diagnosed as having GERD with no specific cause and GI food allergies to certain proteins (casein/milk, soy, peanut) even though antigen specific testing was negative.

We removed the offending foods from his diet and have had a much healthier and happier baby... (occassional reflux, but constipation/diarrhea and rashes only when a "bad" food accidentally slips in).

Also, he is a very picky eater and was sent to a SLP to determine if he had a swallowing malfunction, but he didn't--they determined he was just picky.

His weight dropped from the 70th to the 20-30th %ile at his 2 yr appt, but both pediatrician and pediatric GI doc were unconcerned since his growth was OK, he was healthy, and he is a picky eater (plus VERY active).

Fast forward to last week (almost a year). He started having recurring incidences of rectal prolapse. Pediatrician sent us to a surgeon. Surgeon tells us surgery not warranted, and it is most likely due to straining on the potty chair during potty training. But orders a genetic carrier screen for CF...

I got curious and called and asked why this was ordered, and was told it is routine in cases of rectal prolapse just to "rule out the atypical", but then I told the surgeon about the previous GI issues (which he wasn't really aware of since he'd never seen my son before), and he became somewhat (but not greatly) concerned, and told me that being a surgeon this was not his area of expertise, but he is going to make some phone calls and do some research and decide if a sweat test is warranted in this case. He will call me back next week.

Needless to say I am very concerned and on pins and needles.

<b>Does anyone think that my story sounds familiar? Could this medical history sound like a kid that has gone undx?? Or is it pretty far-fetched based on this scenario that we have a child with CF?</b>

Any advice etc would be very appreciated...

TIA,
-J
 
B

BrsMiney

New member
My son will be three yrs old in April. He has never had a respiratory infection of any kind... He has battled GI issues from birth though. Starting with severe "colic" but progressing to pain, constipation/diarrhea, rashes, and spitting-up that was too bad for the doctor to continue to write off.

So we were referred and put under the care of a pedi GI for his 1st 2 yrs. He was diagnosed as having GERD with no specific cause and GI food allergies to certain proteins (casein/milk, soy, peanut) even though antigen specific testing was negative.

We removed the offending foods from his diet and have had a much healthier and happier baby... (occassional reflux, but constipation/diarrhea and rashes only when a "bad" food accidentally slips in).

Also, he is a very picky eater and was sent to a SLP to determine if he had a swallowing malfunction, but he didn't--they determined he was just picky.

His weight dropped from the 70th to the 20-30th %ile at his 2 yr appt, but both pediatrician and pediatric GI doc were unconcerned since his growth was OK, he was healthy, and he is a picky eater (plus VERY active).

Fast forward to last week (almost a year). He started having recurring incidences of rectal prolapse. Pediatrician sent us to a surgeon. Surgeon tells us surgery not warranted, and it is most likely due to straining on the potty chair during potty training. But orders a genetic carrier screen for CF...

I got curious and called and asked why this was ordered, and was told it is routine in cases of rectal prolapse just to "rule out the atypical", but then I told the surgeon about the previous GI issues (which he wasn't really aware of since he'd never seen my son before), and he became somewhat (but not greatly) concerned, and told me that being a surgeon this was not his area of expertise, but he is going to make some phone calls and do some research and decide if a sweat test is warranted in this case. He will call me back next week.

Needless to say I am very concerned and on pins and needles.

<b>Does anyone think that my story sounds familiar? Could this medical history sound like a kid that has gone undx?? Or is it pretty far-fetched based on this scenario that we have a child with CF?</b>

Any advice etc would be very appreciated...

TIA,
-J
 
B

BrsMiney

New member
My son will be three yrs old in April. He has never had a respiratory infection of any kind... He has battled GI issues from birth though. Starting with severe "colic" but progressing to pain, constipation/diarrhea, rashes, and spitting-up that was too bad for the doctor to continue to write off.

So we were referred and put under the care of a pedi GI for his 1st 2 yrs. He was diagnosed as having GERD with no specific cause and GI food allergies to certain proteins (casein/milk, soy, peanut) even though antigen specific testing was negative.

We removed the offending foods from his diet and have had a much healthier and happier baby... (occassional reflux, but constipation/diarrhea and rashes only when a "bad" food accidentally slips in).

Also, he is a very picky eater and was sent to a SLP to determine if he had a swallowing malfunction, but he didn't--they determined he was just picky.

His weight dropped from the 70th to the 20-30th %ile at his 2 yr appt, but both pediatrician and pediatric GI doc were unconcerned since his growth was OK, he was healthy, and he is a picky eater (plus VERY active).

Fast forward to last week (almost a year). He started having recurring incidences of rectal prolapse. Pediatrician sent us to a surgeon. Surgeon tells us surgery not warranted, and it is most likely due to straining on the potty chair during potty training. But orders a genetic carrier screen for CF...

I got curious and called and asked why this was ordered, and was told it is routine in cases of rectal prolapse just to "rule out the atypical", but then I told the surgeon about the previous GI issues (which he wasn't really aware of since he'd never seen my son before), and he became somewhat (but not greatly) concerned, and told me that being a surgeon this was not his area of expertise, but he is going to make some phone calls and do some research and decide if a sweat test is warranted in this case. He will call me back next week.

Needless to say I am very concerned and on pins and needles.

<b>Does anyone think that my story sounds familiar? Could this medical history sound like a kid that has gone undx?? Or is it pretty far-fetched based on this scenario that we have a child with CF?</b>

Any advice etc would be very appreciated...

TIA,
-J
 
B

BrsMiney

New member
My son will be three yrs old in April. He has never had a respiratory infection of any kind... He has battled GI issues from birth though. Starting with severe "colic" but progressing to pain, constipation/diarrhea, rashes, and spitting-up that was too bad for the doctor to continue to write off.

So we were referred and put under the care of a pedi GI for his 1st 2 yrs. He was diagnosed as having GERD with no specific cause and GI food allergies to certain proteins (casein/milk, soy, peanut) even though antigen specific testing was negative.

We removed the offending foods from his diet and have had a much healthier and happier baby... (occassional reflux, but constipation/diarrhea and rashes only when a "bad" food accidentally slips in).

Also, he is a very picky eater and was sent to a SLP to determine if he had a swallowing malfunction, but he didn't--they determined he was just picky.

His weight dropped from the 70th to the 20-30th %ile at his 2 yr appt, but both pediatrician and pediatric GI doc were unconcerned since his growth was OK, he was healthy, and he is a picky eater (plus VERY active).

Fast forward to last week (almost a year). He started having recurring incidences of rectal prolapse. Pediatrician sent us to a surgeon. Surgeon tells us surgery not warranted, and it is most likely due to straining on the potty chair during potty training. But orders a genetic carrier screen for CF...

I got curious and called and asked why this was ordered, and was told it is routine in cases of rectal prolapse just to "rule out the atypical", but then I told the surgeon about the previous GI issues (which he wasn't really aware of since he'd never seen my son before), and he became somewhat (but not greatly) concerned, and told me that being a surgeon this was not his area of expertise, but he is going to make some phone calls and do some research and decide if a sweat test is warranted in this case. He will call me back next week.

Needless to say I am very concerned and on pins and needles.

<b>Does anyone think that my story sounds familiar? Could this medical history sound like a kid that has gone undx?? Or is it pretty far-fetched based on this scenario that we have a child with CF?</b>

Any advice etc would be very appreciated...

TIA,
-J
 
R

Ratatosk

Administrator
Staff member
?? about GI probs as symptoms

I've heard of it. DS was diagnosed shortly after he was born because he had a bowel obstruction. His symptoms are primarily digestive as he's pancreatic insufficient and requires digestive enzymes to digest his food. Same stick mucus that can affect the lungs, sinuses, etc. can also affect the digestive track. He also had reflux as a baby, constipation issues as well as very loose stools.

I know of another family whose child's pediatrician ordered a sweat test after issues with constipation and rectal prolapse.
 
R

Ratatosk

Administrator
Staff member
?? about GI probs as symptoms

I've heard of it. DS was diagnosed shortly after he was born because he had a bowel obstruction. His symptoms are primarily digestive as he's pancreatic insufficient and requires digestive enzymes to digest his food. Same stick mucus that can affect the lungs, sinuses, etc. can also affect the digestive track. He also had reflux as a baby, constipation issues as well as very loose stools.

I know of another family whose child's pediatrician ordered a sweat test after issues with constipation and rectal prolapse.
 
R

Ratatosk

Administrator
Staff member
?? about GI probs as symptoms

I've heard of it. DS was diagnosed shortly after he was born because he had a bowel obstruction. His symptoms are primarily digestive as he's pancreatic insufficient and requires digestive enzymes to digest his food. Same stick mucus that can affect the lungs, sinuses, etc. can also affect the digestive track. He also had reflux as a baby, constipation issues as well as very loose stools.

I know of another family whose child's pediatrician ordered a sweat test after issues with constipation and rectal prolapse.
 
R

Ratatosk

Administrator
Staff member
?? about GI probs as symptoms

I've heard of it. DS was diagnosed shortly after he was born because he had a bowel obstruction. His symptoms are primarily digestive as he's pancreatic insufficient and requires digestive enzymes to digest his food. Same stick mucus that can affect the lungs, sinuses, etc. can also affect the digestive track. He also had reflux as a baby, constipation issues as well as very loose stools.

I know of another family whose child's pediatrician ordered a sweat test after issues with constipation and rectal prolapse.
 
R

Ratatosk

Administrator
Staff member
?? about GI probs as symptoms

I've heard of it. DS was diagnosed shortly after he was born because he had a bowel obstruction. His symptoms are primarily digestive as he's pancreatic insufficient and requires digestive enzymes to digest his food. Same stick mucus that can affect the lungs, sinuses, etc. can also affect the digestive track. He also had reflux as a baby, constipation issues as well as very loose stools.

I know of another family whose child's pediatrician ordered a sweat test after issues with constipation and rectal prolapse.
 
K

ktsmom

New member
?? about GI probs as symptoms

I'm sorry to say that our daughter was diagnosed at age 3 years and 3 months based solely on GI issues. She had numerous, subtle symptoms, some of which seemed to come and go. Was failure to thrive as a newborn with no explanation even after some tests, was always hungry, frothy green poo although she was strictly breast fed, reflux, mucus and later on grease in her stools, very distended belly her whole life, horrible tummy pains starting at about 3 years old.

She continued to slide off the growth charts (from 95%-ile to 20%-ile) and we had to absolutely beg our ped that it wasn't milk allergies or anything else he had come up with. He finally consulted a pediatric GI who recommended a sweat test "to rule out CF".

Two positive sweat tests on a Thursday, rectal prolapse on Saturday, another positive sweat test on Monday, this one done at the CF doc's office. Genetic testing revealed that she has two copies of the Delta F508 mutation (the most common mutation).

Also - regarding the rectal prolapse, a very experienced pediatric rectal surgeon (seriously, this is her specialty) told us that surgery was not necessary with a rectal prolapse.

Sorry this was so long; I can get pretty passionate when I think about the suffering our child went through while we tried to get a diagnosis. Depending on the <b>extent</b> of the genetic testing done, it might not catch your child's mutations. You use the word <b>screening</b>, but I would defintely go forward with <b>full</b> genetic testing and the sweat test. I think you are fortunate that this surgeon has paid attention and wants to be thorough. Best wishes to you and I hope you find answers.
 
K

ktsmom

New member
?? about GI probs as symptoms

I'm sorry to say that our daughter was diagnosed at age 3 years and 3 months based solely on GI issues. She had numerous, subtle symptoms, some of which seemed to come and go. Was failure to thrive as a newborn with no explanation even after some tests, was always hungry, frothy green poo although she was strictly breast fed, reflux, mucus and later on grease in her stools, very distended belly her whole life, horrible tummy pains starting at about 3 years old.

She continued to slide off the growth charts (from 95%-ile to 20%-ile) and we had to absolutely beg our ped that it wasn't milk allergies or anything else he had come up with. He finally consulted a pediatric GI who recommended a sweat test "to rule out CF".

Two positive sweat tests on a Thursday, rectal prolapse on Saturday, another positive sweat test on Monday, this one done at the CF doc's office. Genetic testing revealed that she has two copies of the Delta F508 mutation (the most common mutation).

Also - regarding the rectal prolapse, a very experienced pediatric rectal surgeon (seriously, this is her specialty) told us that surgery was not necessary with a rectal prolapse.

Sorry this was so long; I can get pretty passionate when I think about the suffering our child went through while we tried to get a diagnosis. Depending on the <b>extent</b> of the genetic testing done, it might not catch your child's mutations. You use the word <b>screening</b>, but I would defintely go forward with <b>full</b> genetic testing and the sweat test. I think you are fortunate that this surgeon has paid attention and wants to be thorough. Best wishes to you and I hope you find answers.
 
K

ktsmom

New member
?? about GI probs as symptoms

I'm sorry to say that our daughter was diagnosed at age 3 years and 3 months based solely on GI issues. She had numerous, subtle symptoms, some of which seemed to come and go. Was failure to thrive as a newborn with no explanation even after some tests, was always hungry, frothy green poo although she was strictly breast fed, reflux, mucus and later on grease in her stools, very distended belly her whole life, horrible tummy pains starting at about 3 years old.

She continued to slide off the growth charts (from 95%-ile to 20%-ile) and we had to absolutely beg our ped that it wasn't milk allergies or anything else he had come up with. He finally consulted a pediatric GI who recommended a sweat test "to rule out CF".

Two positive sweat tests on a Thursday, rectal prolapse on Saturday, another positive sweat test on Monday, this one done at the CF doc's office. Genetic testing revealed that she has two copies of the Delta F508 mutation (the most common mutation).

Also - regarding the rectal prolapse, a very experienced pediatric rectal surgeon (seriously, this is her specialty) told us that surgery was not necessary with a rectal prolapse.

Sorry this was so long; I can get pretty passionate when I think about the suffering our child went through while we tried to get a diagnosis. Depending on the <b>extent</b> of the genetic testing done, it might not catch your child's mutations. You use the word <b>screening</b>, but I would defintely go forward with <b>full</b> genetic testing and the sweat test. I think you are fortunate that this surgeon has paid attention and wants to be thorough. Best wishes to you and I hope you find answers.
 
K

ktsmom

New member
?? about GI probs as symptoms

I'm sorry to say that our daughter was diagnosed at age 3 years and 3 months based solely on GI issues. She had numerous, subtle symptoms, some of which seemed to come and go. Was failure to thrive as a newborn with no explanation even after some tests, was always hungry, frothy green poo although she was strictly breast fed, reflux, mucus and later on grease in her stools, very distended belly her whole life, horrible tummy pains starting at about 3 years old.

She continued to slide off the growth charts (from 95%-ile to 20%-ile) and we had to absolutely beg our ped that it wasn't milk allergies or anything else he had come up with. He finally consulted a pediatric GI who recommended a sweat test "to rule out CF".

Two positive sweat tests on a Thursday, rectal prolapse on Saturday, another positive sweat test on Monday, this one done at the CF doc's office. Genetic testing revealed that she has two copies of the Delta F508 mutation (the most common mutation).

Also - regarding the rectal prolapse, a very experienced pediatric rectal surgeon (seriously, this is her specialty) told us that surgery was not necessary with a rectal prolapse.

Sorry this was so long; I can get pretty passionate when I think about the suffering our child went through while we tried to get a diagnosis. Depending on the <b>extent</b> of the genetic testing done, it might not catch your child's mutations. You use the word <b>screening</b>, but I would defintely go forward with <b>full</b> genetic testing and the sweat test. I think you are fortunate that this surgeon has paid attention and wants to be thorough. Best wishes to you and I hope you find answers.
 
K

ktsmom

New member
?? about GI probs as symptoms

I'm sorry to say that our daughter was diagnosed at age 3 years and 3 months based solely on GI issues. She had numerous, subtle symptoms, some of which seemed to come and go. Was failure to thrive as a newborn with no explanation even after some tests, was always hungry, frothy green poo although she was strictly breast fed, reflux, mucus and later on grease in her stools, very distended belly her whole life, horrible tummy pains starting at about 3 years old.

She continued to slide off the growth charts (from 95%-ile to 20%-ile) and we had to absolutely beg our ped that it wasn't milk allergies or anything else he had come up with. He finally consulted a pediatric GI who recommended a sweat test "to rule out CF".

Two positive sweat tests on a Thursday, rectal prolapse on Saturday, another positive sweat test on Monday, this one done at the CF doc's office. Genetic testing revealed that she has two copies of the Delta F508 mutation (the most common mutation).

Also - regarding the rectal prolapse, a very experienced pediatric rectal surgeon (seriously, this is her specialty) told us that surgery was not necessary with a rectal prolapse.

Sorry this was so long; I can get pretty passionate when I think about the suffering our child went through while we tried to get a diagnosis. Depending on the <b>extent</b> of the genetic testing done, it might not catch your child's mutations. You use the word <b>screening</b>, but I would defintely go forward with <b>full</b> genetic testing and the sweat test. I think you are fortunate that this surgeon has paid attention and wants to be thorough. Best wishes to you and I hope you find answers.
 
S

sdelorenzo

Guest
?? about GI probs as symptoms

We were at the hospital after my infant daughter was diagnosed when the GI dr on rounds said he had another patient with our same last name. He was referring to my four year old nephew. My nephew had been having GI problems for a few years. He was on the small side and had lots of constipation. Turns out he also had cf and two copies of delta 508. Hopefully they can arrange for cf testing quickly so you don't have to worry so much. It is likely that it isn't cf, but it doesn't hurt to rule it out.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
?? about GI probs as symptoms

We were at the hospital after my infant daughter was diagnosed when the GI dr on rounds said he had another patient with our same last name. He was referring to my four year old nephew. My nephew had been having GI problems for a few years. He was on the small side and had lots of constipation. Turns out he also had cf and two copies of delta 508. Hopefully they can arrange for cf testing quickly so you don't have to worry so much. It is likely that it isn't cf, but it doesn't hurt to rule it out.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
?? about GI probs as symptoms

We were at the hospital after my infant daughter was diagnosed when the GI dr on rounds said he had another patient with our same last name. He was referring to my four year old nephew. My nephew had been having GI problems for a few years. He was on the small side and had lots of constipation. Turns out he also had cf and two copies of delta 508. Hopefully they can arrange for cf testing quickly so you don't have to worry so much. It is likely that it isn't cf, but it doesn't hurt to rule it out.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
?? about GI probs as symptoms

We were at the hospital after my infant daughter was diagnosed when the GI dr on rounds said he had another patient with our same last name. He was referring to my four year old nephew. My nephew had been having GI problems for a few years. He was on the small side and had lots of constipation. Turns out he also had cf and two copies of delta 508. Hopefully they can arrange for cf testing quickly so you don't have to worry so much. It is likely that it isn't cf, but it doesn't hurt to rule it out.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
S

sdelorenzo

Guest
?? about GI probs as symptoms

We were at the hospital after my infant daughter was diagnosed when the GI dr on rounds said he had another patient with our same last name. He was referring to my four year old nephew. My nephew had been having GI problems for a few years. He was on the small side and had lots of constipation. Turns out he also had cf and two copies of delta 508. Hopefully they can arrange for cf testing quickly so you don't have to worry so much. It is likely that it isn't cf, but it doesn't hurt to rule it out.
Sharon, mom of Sophia, 6 and Jack, 4 both with cf, aunt to Joseph, 10 with cf
 
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