FRUSTRATED

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antonette1279

New member
Well we still haven't gotten my son's genetic test back yet to determine wether or not he has CF. In the mean time the poor boy has been sick for THREE MONTHS now. He is only 3.5 months old!! He has a horrible cough, horrible congestion, not gaining weight, low pre albumin levels and transferrin levels. He has loose stool all the time and no one knows what is wrong with him. They are all assuming it is CF but the wait is killing us. He cries all day and he just breaths so hard. He has been hospitalized twice now for a week at a time. He doesn't sleep but he does eat and yet still not gaining much weight. His gas smells HORRIBLE and I just don't know what else it could be if it is not CF but the wait is driving us nuts!!!!
 
A

antonette1279

New member
Well we still haven't gotten my son's genetic test back yet to determine wether or not he has CF. In the mean time the poor boy has been sick for THREE MONTHS now. He is only 3.5 months old!! He has a horrible cough, horrible congestion, not gaining weight, low pre albumin levels and transferrin levels. He has loose stool all the time and no one knows what is wrong with him. They are all assuming it is CF but the wait is killing us. He cries all day and he just breaths so hard. He has been hospitalized twice now for a week at a time. He doesn't sleep but he does eat and yet still not gaining much weight. His gas smells HORRIBLE and I just don't know what else it could be if it is not CF but the wait is driving us nuts!!!!
 
A

antonette1279

New member
Well we still haven't gotten my son's genetic test back yet to determine wether or not he has CF. In the mean time the poor boy has been sick for THREE MONTHS now. He is only 3.5 months old!! He has a horrible cough, horrible congestion, not gaining weight, low pre albumin levels and transferrin levels. He has loose stool all the time and no one knows what is wrong with him. They are all assuming it is CF but the wait is killing us. He cries all day and he just breaths so hard. He has been hospitalized twice now for a week at a time. He doesn't sleep but he does eat and yet still not gaining much weight. His gas smells HORRIBLE and I just don't know what else it could be if it is not CF but the wait is driving us nuts!!!!
 
A

antonette1279

New member
Well we still haven't gotten my son's genetic test back yet to determine wether or not he has CF. In the mean time the poor boy has been sick for THREE MONTHS now. He is only 3.5 months old!! He has a horrible cough, horrible congestion, not gaining weight, low pre albumin levels and transferrin levels. He has loose stool all the time and no one knows what is wrong with him. They are all assuming it is CF but the wait is killing us. He cries all day and he just breaths so hard. He has been hospitalized twice now for a week at a time. He doesn't sleep but he does eat and yet still not gaining much weight. His gas smells HORRIBLE and I just don't know what else it could be if it is not CF but the wait is driving us nuts!!!!
 
A

antonette1279

New member
Well we still haven't gotten my son's genetic test back yet to determine wether or not he has CF. In the mean time the poor boy has been sick for THREE MONTHS now. He is only 3.5 months old!! He has a horrible cough, horrible congestion, not gaining weight, low pre albumin levels and transferrin levels. He has loose stool all the time and no one knows what is wrong with him. They are all assuming it is CF but the wait is killing us. He cries all day and he just breaths so hard. He has been hospitalized twice now for a week at a time. He doesn't sleep but he does eat and yet still not gaining much weight. His gas smells HORRIBLE and I just don't know what else it could be if it is not CF but the wait is driving us nuts!!!!
 
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RebekahsMom

New member
I understand your frustration. My daughter started getting sick at 11 months old. It started with a constant runny nose, then the cough developed, then the projectile vomiting because of the coughing. Her stools were ALWAYS bulky, oily, and very, very foul smelling. She was FINALLY diagnosed at 21 1/2 months old.

I hope you find out soon what is wrong with your son so that he can begin to get the proper care and treatment that he needs.
 
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RebekahsMom

New member
I understand your frustration. My daughter started getting sick at 11 months old. It started with a constant runny nose, then the cough developed, then the projectile vomiting because of the coughing. Her stools were ALWAYS bulky, oily, and very, very foul smelling. She was FINALLY diagnosed at 21 1/2 months old.

I hope you find out soon what is wrong with your son so that he can begin to get the proper care and treatment that he needs.
 
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RebekahsMom

New member
I understand your frustration. My daughter started getting sick at 11 months old. It started with a constant runny nose, then the cough developed, then the projectile vomiting because of the coughing. Her stools were ALWAYS bulky, oily, and very, very foul smelling. She was FINALLY diagnosed at 21 1/2 months old.

I hope you find out soon what is wrong with your son so that he can begin to get the proper care and treatment that he needs.
 
R

RebekahsMom

New member
I understand your frustration. My daughter started getting sick at 11 months old. It started with a constant runny nose, then the cough developed, then the projectile vomiting because of the coughing. Her stools were ALWAYS bulky, oily, and very, very foul smelling. She was FINALLY diagnosed at 21 1/2 months old.

I hope you find out soon what is wrong with your son so that he can begin to get the proper care and treatment that he needs.
 
R

RebekahsMom

New member
I understand your frustration. My daughter started getting sick at 11 months old. It started with a constant runny nose, then the cough developed, then the projectile vomiting because of the coughing. Her stools were ALWAYS bulky, oily, and very, very foul smelling. She was FINALLY diagnosed at 21 1/2 months old.
<br />
<br />I hope you find out soon what is wrong with your son so that he can begin to get the proper care and treatment that he needs.
 
H

hmw

New member
FRUSTRAT

I don't blame you for this driving you crazy now in light of so much going on.

Has he had a sweat test? Results on that come back in a matter of hours and could have been done a long time ago! If they are 'assuming' it is CF and he's sick to the point of having needed to be hospitalized, I don't understand at all why they are doing nothing to treat it as such... at the very least, he has symptoms requiring treatment.

Has he at least started pancreatic enzymes? Are you doing cpt or any nebs?
 
H

hmw

New member
FRUSTRAT

I don't blame you for this driving you crazy now in light of so much going on.

Has he had a sweat test? Results on that come back in a matter of hours and could have been done a long time ago! If they are 'assuming' it is CF and he's sick to the point of having needed to be hospitalized, I don't understand at all why they are doing nothing to treat it as such... at the very least, he has symptoms requiring treatment.

Has he at least started pancreatic enzymes? Are you doing cpt or any nebs?
 
H

hmw

New member
FRUSTRAT

I don't blame you for this driving you crazy now in light of so much going on.

Has he had a sweat test? Results on that come back in a matter of hours and could have been done a long time ago! If they are 'assuming' it is CF and he's sick to the point of having needed to be hospitalized, I don't understand at all why they are doing nothing to treat it as such... at the very least, he has symptoms requiring treatment.

Has he at least started pancreatic enzymes? Are you doing cpt or any nebs?
 
H

hmw

New member
FRUSTRAT

I don't blame you for this driving you crazy now in light of so much going on.

Has he had a sweat test? Results on that come back in a matter of hours and could have been done a long time ago! If they are 'assuming' it is CF and he's sick to the point of having needed to be hospitalized, I don't understand at all why they are doing nothing to treat it as such... at the very least, he has symptoms requiring treatment.

Has he at least started pancreatic enzymes? Are you doing cpt or any nebs?
 
H

hmw

New member
FRUSTRAT

I don't blame you for this driving you crazy now in light of so much going on.
<br />
<br />Has he had a sweat test? Results on that come back in a matter of hours and could have been done a long time ago! If they are 'assuming' it is CF and he's sick to the point of having needed to be hospitalized, I don't understand at all why they are doing nothing to treat it as such... at the very least, he has symptoms requiring treatment.
<br />
<br />Has he at least started pancreatic enzymes? Are you doing cpt or any nebs?
<br />
<br />
 
M

Mommafirst

Guest
I don't blame you for being frustrated. I suppose if I were in your shoes, I'd just assume its CF and push to get all of his care aligned with a CF dx. Poor little guy, I so hope he starts to do better ASAP.
 
M

Mommafirst

Guest
I don't blame you for being frustrated. I suppose if I were in your shoes, I'd just assume its CF and push to get all of his care aligned with a CF dx. Poor little guy, I so hope he starts to do better ASAP.
 
M

Mommafirst

Guest
I don't blame you for being frustrated. I suppose if I were in your shoes, I'd just assume its CF and push to get all of his care aligned with a CF dx. Poor little guy, I so hope he starts to do better ASAP.
 
M

Mommafirst

Guest
I don't blame you for being frustrated. I suppose if I were in your shoes, I'd just assume its CF and push to get all of his care aligned with a CF dx. Poor little guy, I so hope he starts to do better ASAP.
 
M

Mommafirst

Guest
I don't blame you for being frustrated. I suppose if I were in your shoes, I'd just assume its CF and push to get all of his care aligned with a CF dx. Poor little guy, I so hope he starts to do better ASAP.
 
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