Adam has been diagnosed

A

auntcob

New member
Hi all,

My son went for a very long and thorough appt yesterday. After two hours with a doctor, chest x-ray, pft, blood work, etc., the doctor dx him with atypical or variant CF. If you've read my posts before, you know he had a borderline sweat test and the company that did his genetic screening labeled his mutations as benign. One of them was a 5Tvariant which does cause symptoms in many folks. So, then we met with the RT to learn CPT, the dietician--started him on zenpep, and met the director of the CF clinic. I guess we are starting a journey that many of you began when your children were babies, not 14 year old.

Peace,

Chris
 
A

auntcob

New member
Hi all,

My son went for a very long and thorough appt yesterday. After two hours with a doctor, chest x-ray, pft, blood work, etc., the doctor dx him with atypical or variant CF. If you've read my posts before, you know he had a borderline sweat test and the company that did his genetic screening labeled his mutations as benign. One of them was a 5Tvariant which does cause symptoms in many folks. So, then we met with the RT to learn CPT, the dietician--started him on zenpep, and met the director of the CF clinic. I guess we are starting a journey that many of you began when your children were babies, not 14 year old.

Peace,

Chris
 
A

auntcob

New member
Hi all,

My son went for a very long and thorough appt yesterday. After two hours with a doctor, chest x-ray, pft, blood work, etc., the doctor dx him with atypical or variant CF. If you've read my posts before, you know he had a borderline sweat test and the company that did his genetic screening labeled his mutations as benign. One of them was a 5Tvariant which does cause symptoms in many folks. So, then we met with the RT to learn CPT, the dietician--started him on zenpep, and met the director of the CF clinic. I guess we are starting a journey that many of you began when your children were babies, not 14 year old.

Peace,

Chris
 
A

auntcob

New member
Hi all,

My son went for a very long and thorough appt yesterday. After two hours with a doctor, chest x-ray, pft, blood work, etc., the doctor dx him with atypical or variant CF. If you've read my posts before, you know he had a borderline sweat test and the company that did his genetic screening labeled his mutations as benign. One of them was a 5Tvariant which does cause symptoms in many folks. So, then we met with the RT to learn CPT, the dietician--started him on zenpep, and met the director of the CF clinic. I guess we are starting a journey that many of you began when your children were babies, not 14 year old.

Peace,

Chris
 
A

auntcob

New member
Hi all,
<br />
<br />My son went for a very long and thorough appt yesterday. After two hours with a doctor, chest x-ray, pft, blood work, etc., the doctor dx him with atypical or variant CF. If you've read my posts before, you know he had a borderline sweat test and the company that did his genetic screening labeled his mutations as benign. One of them was a 5Tvariant which does cause symptoms in many folks. So, then we met with the RT to learn CPT, the dietician--started him on zenpep, and met the director of the CF clinic. I guess we are starting a journey that many of you began when your children were babies, not 14 year old.
<br />
<br />Peace,
<br />
<br />Chris
 
N

NYCLawGirl

New member
well, congrats on finally receiving a diagnosis, even if it's not what you wanted. your son will be healthier fr it, so kudos to you for pushing!

as to the atypical part, well, it's not my place to make medical opinions, but i truly don't see how a young man with lung involvement and pancreatic insufficiency could be atypical. i can maybe accept "atypical" if someone is entirely without lung involvement and/or pancreatic sufficient, but it sounds like your son has more classic symptoms. at any rate, it's great that you'll be starting treatments that can help!

zenpep is brand new, right? let us know what you think about it!
 
N

NYCLawGirl

New member
well, congrats on finally receiving a diagnosis, even if it's not what you wanted. your son will be healthier fr it, so kudos to you for pushing!

as to the atypical part, well, it's not my place to make medical opinions, but i truly don't see how a young man with lung involvement and pancreatic insufficiency could be atypical. i can maybe accept "atypical" if someone is entirely without lung involvement and/or pancreatic sufficient, but it sounds like your son has more classic symptoms. at any rate, it's great that you'll be starting treatments that can help!

zenpep is brand new, right? let us know what you think about it!
 
N

NYCLawGirl

New member
well, congrats on finally receiving a diagnosis, even if it's not what you wanted. your son will be healthier fr it, so kudos to you for pushing!

as to the atypical part, well, it's not my place to make medical opinions, but i truly don't see how a young man with lung involvement and pancreatic insufficiency could be atypical. i can maybe accept "atypical" if someone is entirely without lung involvement and/or pancreatic sufficient, but it sounds like your son has more classic symptoms. at any rate, it's great that you'll be starting treatments that can help!

zenpep is brand new, right? let us know what you think about it!
 
N

NYCLawGirl

New member
well, congrats on finally receiving a diagnosis, even if it's not what you wanted. your son will be healthier fr it, so kudos to you for pushing!

as to the atypical part, well, it's not my place to make medical opinions, but i truly don't see how a young man with lung involvement and pancreatic insufficiency could be atypical. i can maybe accept "atypical" if someone is entirely without lung involvement and/or pancreatic sufficient, but it sounds like your son has more classic symptoms. at any rate, it's great that you'll be starting treatments that can help!

zenpep is brand new, right? let us know what you think about it!
 
N

NYCLawGirl

New member
well, congrats on finally receiving a diagnosis, even if it's not what you wanted. your son will be healthier fr it, so kudos to you for pushing!
<br />
<br />as to the atypical part, well, it's not my place to make medical opinions, but i truly don't see how a young man with lung involvement and pancreatic insufficiency could be atypical. i can maybe accept "atypical" if someone is entirely without lung involvement and/or pancreatic sufficient, but it sounds like your son has more classic symptoms. at any rate, it's great that you'll be starting treatments that can help!
<br />
<br />zenpep is brand new, right? let us know what you think about it!
 
M

Mommafirst

Guest
Diagnosis is always difficult. Its good to have a name for all he's dealt with. I hope he settles into the routine soon enough and starts to really see an increase in how he feels.
 
M

Mommafirst

Guest
Diagnosis is always difficult. Its good to have a name for all he's dealt with. I hope he settles into the routine soon enough and starts to really see an increase in how he feels.
 
M

Mommafirst

Guest
Diagnosis is always difficult. Its good to have a name for all he's dealt with. I hope he settles into the routine soon enough and starts to really see an increase in how he feels.
 
M

Mommafirst

Guest
Diagnosis is always difficult. Its good to have a name for all he's dealt with. I hope he settles into the routine soon enough and starts to really see an increase in how he feels.
 
M

Mommafirst

Guest
Diagnosis is always difficult. Its good to have a name for all he's dealt with. I hope he settles into the routine soon enough and starts to really see an increase in how he feels.
 
A

auntcob

New member
Clarification--the other term the doctor used was variant CF. Not sure if that is coming from the 5T variant or not. We'll keep everyone informed on the zenpep.
 
A

auntcob

New member
Clarification--the other term the doctor used was variant CF. Not sure if that is coming from the 5T variant or not. We'll keep everyone informed on the zenpep.
 
A

auntcob

New member
Clarification--the other term the doctor used was variant CF. Not sure if that is coming from the 5T variant or not. We'll keep everyone informed on the zenpep.
 
A

auntcob

New member
Clarification--the other term the doctor used was variant CF. Not sure if that is coming from the 5T variant or not. We'll keep everyone informed on the zenpep.
 
A

auntcob

New member
Clarification--the other term the doctor used was variant CF. Not sure if that is coming from the 5T variant or not. We'll keep everyone informed on the zenpep.
 
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