Had the sweat test and blood work

[foreverworshiphim]

My daughter finally had her sweat test and it came back negative. So now we wait for the blood work to come back. I finally (after fighting tooth and nail) got my doctor to agree with sending it to Ambry. I am feeling a bit more confident with the negative sweat test, however the docs still have no idea why she is coughing up so much mucous and choking so easily. They did an entire immune system work up on her and most of that came back okay. Her hemoglobin and hematocrit were high but the doctor did not seem too concerned with that. The ENT said he did not see a reason to proceed with surgery at this point!
What are the chances that with the sweat test being negative that they may still find something on the CF Amplified test? I am trying to put my mind at ease and not worry as much until we can get the results but that will be a long month of waiting....as I am sure many of you have experienced!

Amanda

 

[foreverworshiphim]

My daughter finally had her sweat test and it came back negative. So now we wait for the blood work to come back. I finally (after fighting tooth and nail) got my doctor to agree with sending it to Ambry. I am feeling a bit more confident with the negative sweat test, however the docs still have no idea why she is coughing up so much mucous and choking so easily. They did an entire immune system work up on her and most of that came back okay. Her hemoglobin and hematocrit were high but the doctor did not seem too concerned with that. The ENT said he did not see a reason to proceed with surgery at this point!
What are the chances that with the sweat test being negative that they may still find something on the CF Amplified test? I am trying to put my mind at ease and not worry as much until we can get the results but that will be a long month of waiting....as I am sure many of you have experienced!

Amanda

 

[foreverworshiphim]

My daughter finally had her sweat test and it came back negative. So now we wait for the blood work to come back. I finally (after fighting tooth and nail) got my doctor to agree with sending it to Ambry. I am feeling a bit more confident with the negative sweat test, however the docs still have no idea why she is coughing up so much mucous and choking so easily. They did an entire immune system work up on her and most of that came back okay. Her hemoglobin and hematocrit were high but the doctor did not seem too concerned with that. The ENT said he did not see a reason to proceed with surgery at this point!
<br />What are the chances that with the sweat test being negative that they may still find something on the CF Amplified test? I am trying to put my mind at ease and not worry as much until we can get the results but that will be a long month of waiting....as I am sure many of you have experienced!
<br />
<br />Amanda

 

[Ratatosk]

DS is one who had a normal sweat test, but bloodwork showed cf.

IMO, ask your doctor in the mean time to TREAT the symptoms. Chest Physiotherapy (CPT) to help her clear the mucus, so she's at least more comfortable and able to breathe bette.

Does she have any digestive issues -- reflux, malabpsorption, failure to thrive... Ask for treatment of those as well...

 

[Ratatosk]

DS is one who had a normal sweat test, but bloodwork showed cf.

IMO, ask your doctor in the mean time to TREAT the symptoms. Chest Physiotherapy (CPT) to help her clear the mucus, so she's at least more comfortable and able to breathe bette.

Does she have any digestive issues -- reflux, malabpsorption, failure to thrive... Ask for treatment of those as well...

 

[Ratatosk]

DS is one who had a normal sweat test, but bloodwork showed cf.
<br />
<br />IMO, ask your doctor in the mean time to TREAT the symptoms. Chest Physiotherapy (CPT) to help her clear the mucus, so she's at least more comfortable and able to breathe bette.
<br />
<br />Does she have any digestive issues -- reflux, malabpsorption, failure to thrive... Ask for treatment of those as well...

 

[hmw]

What was the actual result of the sweat test?

I'm very glad she is getting the Ambry testing.

I am also wondering if she has any digestive symptoms...

 

[hmw]

What was the actual result of the sweat test?

I'm very glad she is getting the Ambry testing.

I am also wondering if she has any digestive symptoms...

 

[hmw]

What was the actual result of the sweat test?
<br />
<br />I'm very glad she is getting the Ambry testing.
<br />
<br />I am also wondering if she has any digestive symptoms...

 

[Mommafirst]

How negative was negative? If it was 9, I'd imagine its pretty less likely to be CF. If it was 30 I'd be more concerned.

40-60 are considered borderline, but LOTS of folks around here have had positive CF bloodwork with high negatives or borderlines on the sweat test.

If the bloodwork comes back negative, that doesnt' really answer the issues with the lung issues. Have your doctor check into Schwachmann diamond sydrome and Primary ciliary dyskinesia. Both of these diseases are less common than CF, but have symptoms that can overlap CF and are treated with very similar treatments.

 

[Mommafirst]

How negative was negative? If it was 9, I'd imagine its pretty less likely to be CF. If it was 30 I'd be more concerned.

40-60 are considered borderline, but LOTS of folks around here have had positive CF bloodwork with high negatives or borderlines on the sweat test.

If the bloodwork comes back negative, that doesnt' really answer the issues with the lung issues. Have your doctor check into Schwachmann diamond sydrome and Primary ciliary dyskinesia. Both of these diseases are less common than CF, but have symptoms that can overlap CF and are treated with very similar treatments.

 

[Mommafirst]

How negative was negative? If it was 9, I'd imagine its pretty less likely to be CF. If it was 30 I'd be more concerned.
<br />
<br />40-60 are considered borderline, but LOTS of folks around here have had positive CF bloodwork with high negatives or borderlines on the sweat test.
<br />
<br />If the bloodwork comes back negative, that doesnt' really answer the issues with the lung issues. Have your doctor check into Schwachmann diamond sydrome and Primary ciliary dyskinesia. Both of these diseases are less common than CF, but have symptoms that can overlap CF and are treated with very similar treatments.

 

[foreverworshiphim]

They told me that the number was less than ten but did not give me a specific number. She has had reflux since she was born. She has had two fundoplications for the reflux with the last being in Nov of '09. I went back over her records since Sept of 2007 and her weight has varied from 39lbs to 45lbs. She currently weighs 43. She is not rapidly losing weight but has not really gained any. The ENT that saw her was pretty much a jerk....my daughter was scared of him. Which is really crappy because it took us 3 months to get into him. All of this waiting for that...grrrr. Her pulmo doc did call me late last night and decided to start her on Singulair just to see if that will help until we get the CF blood work back.

 

[foreverworshiphim]

They told me that the number was less than ten but did not give me a specific number. She has had reflux since she was born. She has had two fundoplications for the reflux with the last being in Nov of '09. I went back over her records since Sept of 2007 and her weight has varied from 39lbs to 45lbs. She currently weighs 43. She is not rapidly losing weight but has not really gained any. The ENT that saw her was pretty much a jerk....my daughter was scared of him. Which is really crappy because it took us 3 months to get into him. All of this waiting for that...grrrr. Her pulmo doc did call me late last night and decided to start her on Singulair just to see if that will help until we get the CF blood work back.

 

[foreverworshiphim]

They told me that the number was less than ten but did not give me a specific number. She has had reflux since she was born. She has had two fundoplications for the reflux with the last being in Nov of '09. I went back over her records since Sept of 2007 and her weight has varied from 39lbs to 45lbs. She currently weighs 43. She is not rapidly losing weight but has not really gained any. The ENT that saw her was pretty much a jerk....my daughter was scared of him. Which is really crappy because it took us 3 months to get into him. All of this waiting for that...grrrr. Her pulmo doc did call me late last night and decided to start her on Singulair just to see if that will help until we get the CF blood work back.

 

[antonette1279]

Hello. My son is 5 months old. He has been sick since he was 2 weeks old and they have been "trying" to find out wether or not he has CF. He has a normal sweat test "for the state of PA" and his blood test came back "can not rule out CF" I am so confused and I know exactly what you are going through. He has been admitted to the hospital 4 times in his short 5 months of life with ALL respiratory issues. I hope you get some answers soon. It seems to be taking forever for us.

 

[antonette1279]

Hello. My son is 5 months old. He has been sick since he was 2 weeks old and they have been "trying" to find out wether or not he has CF. He has a normal sweat test "for the state of PA" and his blood test came back "can not rule out CF" I am so confused and I know exactly what you are going through. He has been admitted to the hospital 4 times in his short 5 months of life with ALL respiratory issues. I hope you get some answers soon. It seems to be taking forever for us.

 

[antonette1279]

Hello. My son is 5 months old. He has been sick since he was 2 weeks old and they have been "trying" to find out wether or not he has CF. He has a normal sweat test "for the state of PA" and his blood test came back "can not rule out CF" I am so confused and I know exactly what you are going through. He has been admitted to the hospital 4 times in his short 5 months of life with ALL respiratory issues. I hope you get some answers soon. It seems to be taking forever for us.

 

[hmw]

Antonette~ have you had further testing for Daegan since his initial 90-mutation test? I would pursue getting that, as well as finding out the actual NUMBER result of the sweat test (not just 'normal') and if you aren't getting anywhere, taking him to a new CF center- there are a couple in PA you can choose from if the one you tried initially has not been working with you.

That many hospitalizations is worrisome and your son needs appropriate treatment no matter what is going on- but if it's cf, he needs cf-specific medications and and a start to airway clearance as soon as possible to prevent further damage to his respiratory system.

I wish the best in finding more answers for your little one. <img src="i/expressions/heart.gif" border="0">

 

[hmw]

Antonette~ have you had further testing for Daegan since his initial 90-mutation test? I would pursue getting that, as well as finding out the actual NUMBER result of the sweat test (not just 'normal') and if you aren't getting anywhere, taking him to a new CF center- there are a couple in PA you can choose from if the one you tried initially has not been working with you.

That many hospitalizations is worrisome and your son needs appropriate treatment no matter what is going on- but if it's cf, he needs cf-specific medications and and a start to airway clearance as soon as possible to prevent further damage to his respiratory system.

I wish the best in finding more answers for your little one. <img src="i/expressions/heart.gif" border="0">