Not sure what to do

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Confused

New member
OK, so here is the run down:

I have a 15 month old daughter.

Sweat test of 10.
She had echogenic bowel in utero.
No meconium plug, but very different meconium than my other children and she threw up for the first week and then never even spit up after all of the meconium had passed
Has had bronchitis NUMEROUS times since 2 months old (more than I can count right now)
Has had pneumonia twice
Has had RSV twice
Has had numerous ear infections that resulted in tubes
Has had sinusitis since around 3 months old, 7 times
Always has thick nasty boogers that need to be suctioned out
Has horrible poop, green, slimy smelly, almost diarrhea-like, but with actual food in it, has had this poop since birth, so bad that when she was little it would shoot out of the diaper
Is negative for Celiac's and other food alergies
Weighs 19lbs and is 29in, so very small for 15 months
Has been diagnosed with asthma and has been on inhalers since 4 months old

My dr is very hesitant to go further with CF testing, so I am not sure where to go from here. If you were me would you push for more testing, such as the Ambry test? Or would you think I am barking up the wrong tree by thinking it could be CF? Could this possibly be just really bad allergies and the poop is irrelevant?

Thank you for all of your replies
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Augustmom0003

New member
Definitely push for the Ambry! You'll get many replies/stories here where patients have had negative sweat tests but, in fact, do have CF. I truly hope your daughter comes out negative, but not knowing is much worse! Good luck!
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

Ratatosk

Administrator
Staff member
Was the sweat test done when she was a teeny tiny baby? Was it done at an accreditted facility? Sometimes it's very difficult to get a good sample from a new born. DS' sweat test WAS conducted at an accreditted facilty, but he was only two weeks at the time -- came back as a normal 32. His blood work showed he had CF.

I'd push for testing. I just came across someone who'd been struggling with finding a diagnosis for their 3 year old -- loose stools, frequent infections, failure to thrive, sinus surgeries. Just got the CF diagnosis -- apprently a very rare mutation -- very small percentage of CFers have it.
 

grannylana

New member
I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!
 

grannylana

New member
I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!
 
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