Liam

[Liamsmommy]

Thank you all for you input. Im just sick of Doctors saying it normal and that the end of that. I wasnt sure if a 39 was a good normal or if it was still high enough to look at the genics of my son. Im just getting tired of my son being so sick! I didnt want to start demanding test where I was off base but now i see that a 39 isnt that clear cut.
We live in a very small town and the closest childrens hospital is 2.5 hours but it looks like the best thing for him could be going to Sick kids hospital.
Thank you all for the information and I will keep everyone posted as to what we find out.
Shawna

 

[kayleesgrandma]

Shawna, keep us posted. This sounds like you're going to have to be really aggressive with these doctors. You know when something is not right. Ask them if he was their child what would they do?! Good luck.

 

[kayleesgrandma]

Shawna, keep us posted. This sounds like you're going to have to be really aggressive with these doctors. You know when something is not right. Ask them if he was their child what would they do?! Good luck.

 

[kayleesgrandma]

Shawna, keep us posted. This sounds like you're going to have to be really aggressive with these doctors. You know when something is not right. Ask them if he was their child what would they do?! Good luck.

 

[Alyssa]

Shawna, I think I just posted to this in the newly diagnosed section -- but if not -- yes you are absolutely correct 39 is a high normal and should be further evaluated. See my signature line for a link to my blog for more details on sweat tests. My kids sweat tests numbers are 38 & 41.

***found that yes indeed, I had just posted on the other post***see below

Hi Shawna -- ditto to Heather's post -- I wouldn't trust the 39 sweat test as a conclusive "no CF". Please read my blog (link is in my signature line) My daughter has always tested at 38 and we now know she has CF. Sweat tests are a good, cheap, easy FIRST step in determining a CF diagnosis, but in your case (and may others) it should not be the only factor. Alone it is far too inconclusive if it is anywhere in the borderline or high normal area along with CF symptoms. Your child's symptoms certainly do raise several red flags that should be thoroughly checked out by a physician who is familiar with diagnosis and treating CF. Check out the CFF.org website to find the nearest certified CF center and go there if at all possible. Second to that find a pediatric pulmonologist who professes to have experience with cystic fibrosis.

The genetic testing we are referring to is an extensive blood test -- don't let them just do a "screening" Insist on testing for ALL the known CF genes (more than 1,400) It's expensive and sometime you will run into insurance hassles, but with a good, experience CF doctor you should be able to get it done.

Best wishes, and please keep us posted.

 

[Alyssa]

Shawna, I think I just posted to this in the newly diagnosed section -- but if not -- yes you are absolutely correct 39 is a high normal and should be further evaluated. See my signature line for a link to my blog for more details on sweat tests. My kids sweat tests numbers are 38 & 41.

***found that yes indeed, I had just posted on the other post***see below

Hi Shawna -- ditto to Heather's post -- I wouldn't trust the 39 sweat test as a conclusive "no CF". Please read my blog (link is in my signature line) My daughter has always tested at 38 and we now know she has CF. Sweat tests are a good, cheap, easy FIRST step in determining a CF diagnosis, but in your case (and may others) it should not be the only factor. Alone it is far too inconclusive if it is anywhere in the borderline or high normal area along with CF symptoms. Your child's symptoms certainly do raise several red flags that should be thoroughly checked out by a physician who is familiar with diagnosis and treating CF. Check out the CFF.org website to find the nearest certified CF center and go there if at all possible. Second to that find a pediatric pulmonologist who professes to have experience with cystic fibrosis.

The genetic testing we are referring to is an extensive blood test -- don't let them just do a "screening" Insist on testing for ALL the known CF genes (more than 1,400) It's expensive and sometime you will run into insurance hassles, but with a good, experience CF doctor you should be able to get it done.

Best wishes, and please keep us posted.

 

[Alyssa]

Shawna, I think I just posted to this in the newly diagnosed section -- but if not -- yes you are absolutely correct 39 is a high normal and should be further evaluated. See my signature line for a link to my blog for more details on sweat tests. My kids sweat tests numbers are 38 & 41.

***found that yes indeed, I had just posted on the other post***see below

Hi Shawna -- ditto to Heather's post -- I wouldn't trust the 39 sweat test as a conclusive "no CF". Please read my blog (link is in my signature line) My daughter has always tested at 38 and we now know she has CF. Sweat tests are a good, cheap, easy FIRST step in determining a CF diagnosis, but in your case (and may others) it should not be the only factor. Alone it is far too inconclusive if it is anywhere in the borderline or high normal area along with CF symptoms. Your child's symptoms certainly do raise several red flags that should be thoroughly checked out by a physician who is familiar with diagnosis and treating CF. Check out the CFF.org website to find the nearest certified CF center and go there if at all possible. Second to that find a pediatric pulmonologist who professes to have experience with cystic fibrosis.

The genetic testing we are referring to is an extensive blood test -- don't let them just do a "screening" Insist on testing for ALL the known CF genes (more than 1,400) It's expensive and sometime you will run into insurance hassles, but with a good, experience CF doctor you should be able to get it done.

Best wishes, and please keep us posted.

 

[Liamsmommy]

Thank you all for you encouragement I will be seeing the peds. doctor here tomorrow and hopefully she will have more of his test results and at that time I will be asking for a gen. work up on him and see what they say. I also have gotten him another referral to a different paediatrician who will hopefully have more knowledge about what's going on with my son. I will be sure and keep you all posted as to what happens.
Every time I tell a doctor that his sweat test was 39 they all say "Well that's great its normal" so I'm not to sure if I will be able to convince them to do farther testing in regards to CF??? This is all so frustrating and its not like they have to worry about insurance with my son. We are from Ontario Canada and we still have public health care so no private insurance (that's at least one blessing)

Anyway thank you all and I will keep you posted.
Shawna

 

[Liamsmommy]

Thank you all for you encouragement I will be seeing the peds. doctor here tomorrow and hopefully she will have more of his test results and at that time I will be asking for a gen. work up on him and see what they say. I also have gotten him another referral to a different paediatrician who will hopefully have more knowledge about what's going on with my son. I will be sure and keep you all posted as to what happens.
Every time I tell a doctor that his sweat test was 39 they all say "Well that's great its normal" so I'm not to sure if I will be able to convince them to do farther testing in regards to CF??? This is all so frustrating and its not like they have to worry about insurance with my son. We are from Ontario Canada and we still have public health care so no private insurance (that's at least one blessing)

Anyway thank you all and I will keep you posted.
Shawna

 

[Liamsmommy]

Thank you all for you encouragement I will be seeing the peds. doctor here tomorrow and hopefully she will have more of his test results and at that time I will be asking for a gen. work up on him and see what they say. I also have gotten him another referral to a different paediatrician who will hopefully have more knowledge about what's going on with my son. I will be sure and keep you all posted as to what happens.
Every time I tell a doctor that his sweat test was 39 they all say "Well that's great its normal" so I'm not to sure if I will be able to convince them to do farther testing in regards to CF??? This is all so frustrating and its not like they have to worry about insurance with my son. We are from Ontario Canada and we still have public health care so no private insurance (that's at least one blessing)

Anyway thank you all and I will keep you posted.
Shawna

 

[Liamsmommy]

Just a small update on my frustrations! We went to the Peds doctor today to get the rest of my sons test results: She said all his labs for liver and kidney function have came back normal. I mentioned to her that the 39 sweat test is pretty much boarder Line and she told me NO she said it was perfectly normal and that she would not order Gen testing!!! I dont get it why wont she just do the test if for any reason at all just to give me the peace of mind that she doesn't have CF?? She is however sending us To Sick Kids hospital in Toronto to see a Lung specialist so Im hoping that they will repeat the sweat test and maybe I can get them to do the gen testing there. However it looks like it will be months of limbo.
Thanks all for the info and please pray that Sick Kids will get to the bottom of all of this and do the Gen. testing

Thanks
Shawna

 

[Liamsmommy]

Just a small update on my frustrations! We went to the Peds doctor today to get the rest of my sons test results: She said all his labs for liver and kidney function have came back normal. I mentioned to her that the 39 sweat test is pretty much boarder Line and she told me NO she said it was perfectly normal and that she would not order Gen testing!!! I dont get it why wont she just do the test if for any reason at all just to give me the peace of mind that she doesn't have CF?? She is however sending us To Sick Kids hospital in Toronto to see a Lung specialist so Im hoping that they will repeat the sweat test and maybe I can get them to do the gen testing there. However it looks like it will be months of limbo.
Thanks all for the info and please pray that Sick Kids will get to the bottom of all of this and do the Gen. testing

Thanks
Shawna

 

[Liamsmommy]

Just a small update on my frustrations! We went to the Peds doctor today to get the rest of my sons test results: She said all his labs for liver and kidney function have came back normal. I mentioned to her that the 39 sweat test is pretty much boarder Line and she told me NO she said it was perfectly normal and that she would not order Gen testing!!! I dont get it why wont she just do the test if for any reason at all just to give me the peace of mind that she doesn't have CF?? She is however sending us To Sick Kids hospital in Toronto to see a Lung specialist so Im hoping that they will repeat the sweat test and maybe I can get them to do the gen testing there. However it looks like it will be months of limbo.
Thanks all for the info and please pray that Sick Kids will get to the bottom of all of this and do the Gen. testing

Thanks
Shawna