How long did you wait to be seen at CF clinic

H

hmw

New member
I'm so glad to hear this Lori!

You will get results back very quickly on the sweat test- it's nothing like waiting on genetic testing. If the sweat test is early in the day Thursday you may even hear that day; if not you should hear the next day. If the test is borderline or positive that will almost certainly result in a clinic visit much sooner than the one that is currently scheduled in June.

And yes... we certainly do understand what you are going through... and are here to support you through this! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so glad to hear this Lori!

You will get results back very quickly on the sweat test- it's nothing like waiting on genetic testing. If the sweat test is early in the day Thursday you may even hear that day; if not you should hear the next day. If the test is borderline or positive that will almost certainly result in a clinic visit much sooner than the one that is currently scheduled in June.

And yes... we certainly do understand what you are going through... and are here to support you through this! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so glad to hear this Lori!

You will get results back very quickly on the sweat test- it's nothing like waiting on genetic testing. If the sweat test is early in the day Thursday you may even hear that day; if not you should hear the next day. If the test is borderline or positive that will almost certainly result in a clinic visit much sooner than the one that is currently scheduled in June.

And yes... we certainly do understand what you are going through... and are here to support you through this! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so glad to hear this Lori!

You will get results back very quickly on the sweat test- it's nothing like waiting on genetic testing. If the sweat test is early in the day Thursday you may even hear that day; if not you should hear the next day. If the test is borderline or positive that will almost certainly result in a clinic visit much sooner than the one that is currently scheduled in June.

And yes... we certainly do understand what you are going through... and are here to support you through this! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so glad to hear this Lori!
<br />
<br />You will get results back very quickly on the sweat test- it's nothing like waiting on genetic testing. If the sweat test is early in the day Thursday you may even hear that day; if not you should hear the next day. If the test is borderline or positive that will almost certainly result in a clinic visit much sooner than the one that is currently scheduled in June.
<br />
<br />And yes... we certainly do understand what you are going through... and are here to support you through this! <img src="i/expressions/rose.gif" border="0">
 
M

martysmom

New member
Hi Lori,
I just read your post and I was wondering how you guys are doing? Our situation is very similar to your's. My son is four and was diagnosed with pancreatic insufficiency. He had a borderline sweat test and 32 mutation panel was negative. They recently sent off more mutation testing to quest but for some reason I have a feeling they aren't going to find anything. My son has had so many respitory issues and now the pancreatic insufficiency. It seems to be getting worse as he gets older. We have been going crazy and we don't understand why this is so difficult for doctors to figure out!!! Did they ever mention testing for Schwachman Diamond Syndrome. I think that is our next step if they can't determine CF. My son is being treated as if he has CF. All the same meds and the vest and it has been working wonders! It is just a million times harder to fight insurance companies without a definitive diagnosis!! Hope you are doing well and you get answers!!
 
M

martysmom

New member
Hi Lori,
I just read your post and I was wondering how you guys are doing? Our situation is very similar to your's. My son is four and was diagnosed with pancreatic insufficiency. He had a borderline sweat test and 32 mutation panel was negative. They recently sent off more mutation testing to quest but for some reason I have a feeling they aren't going to find anything. My son has had so many respitory issues and now the pancreatic insufficiency. It seems to be getting worse as he gets older. We have been going crazy and we don't understand why this is so difficult for doctors to figure out!!! Did they ever mention testing for Schwachman Diamond Syndrome. I think that is our next step if they can't determine CF. My son is being treated as if he has CF. All the same meds and the vest and it has been working wonders! It is just a million times harder to fight insurance companies without a definitive diagnosis!! Hope you are doing well and you get answers!!
 
M

martysmom

New member
Hi Lori,
<br />I just read your post and I was wondering how you guys are doing? Our situation is very similar to your's. My son is four and was diagnosed with pancreatic insufficiency. He had a borderline sweat test and 32 mutation panel was negative. They recently sent off more mutation testing to quest but for some reason I have a feeling they aren't going to find anything. My son has had so many respitory issues and now the pancreatic insufficiency. It seems to be getting worse as he gets older. We have been going crazy and we don't understand why this is so difficult for doctors to figure out!!! Did they ever mention testing for Schwachman Diamond Syndrome. I think that is our next step if they can't determine CF. My son is being treated as if he has CF. All the same meds and the vest and it has been working wonders! It is just a million times harder to fight insurance companies without a definitive diagnosis!! Hope you are doing well and you get answers!!
 
J

jonah456

New member
Hi, Martysmom and everyone else -

Thanks for your good wishes. It's looking fairly definitive that my son does NOT have CF. We did the sweat test, which was negative (27 - not even borderline) and talked with the head of the local CF clinic about his genetic test results. He felt that the variant that was found is NOT a CF mutation, so - whew! We're happy that it's not CF, but are still looking for a diagnosis.

Martysmom - he was tested for Schwachmann Diamond, and I thought the result was negative (I though I remembered his dr. telling us that!) but now the dr. can't seem to find those results. In any case, our next step is an upper endoscopy with a pancreatic stim test, etc.

Anyway, thanks again for all your support as we've gone through this. As many of you know, it's just so frustrating to know SOMETHING is wrong with your child but not know what it is. Good luck to all of you and your families.

Lori
 
J

jonah456

New member
Hi, Martysmom and everyone else -

Thanks for your good wishes. It's looking fairly definitive that my son does NOT have CF. We did the sweat test, which was negative (27 - not even borderline) and talked with the head of the local CF clinic about his genetic test results. He felt that the variant that was found is NOT a CF mutation, so - whew! We're happy that it's not CF, but are still looking for a diagnosis.

Martysmom - he was tested for Schwachmann Diamond, and I thought the result was negative (I though I remembered his dr. telling us that!) but now the dr. can't seem to find those results. In any case, our next step is an upper endoscopy with a pancreatic stim test, etc.

Anyway, thanks again for all your support as we've gone through this. As many of you know, it's just so frustrating to know SOMETHING is wrong with your child but not know what it is. Good luck to all of you and your families.

Lori
 
J

jonah456

New member
Hi, Martysmom and everyone else -
<br />
<br />Thanks for your good wishes. It's looking fairly definitive that my son does NOT have CF. We did the sweat test, which was negative (27 - not even borderline) and talked with the head of the local CF clinic about his genetic test results. He felt that the variant that was found is NOT a CF mutation, so - whew! We're happy that it's not CF, but are still looking for a diagnosis.
<br />
<br />Martysmom - he was tested for Schwachmann Diamond, and I thought the result was negative (I though I remembered his dr. telling us that!) but now the dr. can't seem to find those results. In any case, our next step is an upper endoscopy with a pancreatic stim test, etc.
<br />
<br />Anyway, thanks again for all your support as we've gone through this. As many of you know, it's just so frustrating to know SOMETHING is wrong with your child but not know what it is. Good luck to all of you and your families.
<br />
<br />Lori
 
R

Ratatosk

Administrator
Staff member
I hope all works out for you; however, I am concerned with the sweat test results. DS wasn't even borderline either -- 32.
 
R

Ratatosk

Administrator
Staff member
I hope all works out for you; however, I am concerned with the sweat test results. DS wasn't even borderline either -- 32.
 
R

Ratatosk

Administrator
Staff member
I hope all works out for you; however, I am concerned with the sweat test results. DS wasn't even borderline either -- 32.
 
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