Positive sweat test and now maybe not CF?

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Thanks so much. Ely turned 6 today and we are still waiting. She is feeling really good right now so there isnt any big urgency at this time. They have doubled her enzymes to help with weight gain so we will see how that works.
Reading through this web site is very educational and I thank you all for your ideas.
If no mutation is found - even with both positive tests I am going to suggest some of the things we have discussed here.
Thanks again for helping me wait!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[grannylana]

Well can you all help again please!
Ely has another lung thing going on and so yesterday they took her back to the CF center. Her last screening has came back with no mutuations found in the genetic sequencing. My daughter in law says this is genetic sequencing with full disclosure - I am unsure what that is exactly - and she failed to ask about the Ambry Amplified that I told her about from you all. She thinks this is the same thing?
Remember this is her 3rd round but her symptoms are still there.

So now they are sending her to Iowa City for a nasal potential study? Any ideas?
Her lungs show something going on and now they are treating her for asthma since she sounds OK but definitely has something wrong.

Also her upper GI tests were mis read at the former hospital and now they tell us her acid reflux is really bad and she could possiby be aspirating this into her lungs.

With 2 positive sweat tests - no one can tell us anything yet - have been looking for well over 2 months now - with a sick little girl.

Frustrated grandma!

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[okok]

It is so great to hear that the doctors are sending your granddaughter to get a nasal potential difference test. Not everyone is offered this test. If preformed/interpreted by experienced doctors this should really help clear things up for you and your family (and, of course, the doctors.) I think you can feel confident that she is in good hands since generally ONLY people who know what they are doing preform this test. Basically this test can determine how much, if any, functioning CFTR protien your granddaughter has. It is a great test to do when a diagnosis is not clear.

I do think that your granddaughter had either the ambry or quest (just as good as ambry but slower) genetic screen preformed. It sounds like they have done all they can to search for cftr mutations. It must be hard for you that nothing has turned up but maybe that means she just has asthma which would be great... The nasal potential difference test should help the doctors determine whether or not it is asthma or CF. It could certainly lead to a CF diagnosis but i'll be hoping it is something less severe.


I think you should feel confident the doctors are working hard to find out what the best way is to help you granddaughter. Please let us know when you find anything else out. I'll be hoping this test helps the doctors make a diagnosis and that your granddaughter is feeling better soon.

 

[grannylana]

Thanks for your positive thoughts - we will get to the bottom of this. The place they are sending us to in Iowa City is suppoed to be very good and the best for several states here in the midwest. The only place that does the nasal test.

Yes they are leaving no stone unturned and that is great.

 

[grannylana]

Thanks for your positive thoughts - we will get to the bottom of this. The place they are sending us to in Iowa City is suppoed to be very good and the best for several states here in the midwest. The only place that does the nasal test.

Yes they are leaving no stone unturned and that is great.