Update On Liam

Liamsmommy

New member
Hi all I just wanted to say thank you to all for helping me understand sweat test and what I should be looking for with my son.

We went to Sick Kids hospital in Toronto yesterday and I am still not a head with anything. The doctors there have said that his sweat test are not normal (hes now had on at our local hospital and one at the childrens hospital) but they also still will not do the Gene testing they now want todo ANOTHER sweat test and they have a new test (they have had it for 2 years now) that is just like the lung function test for children over 5 and adults where you have to go into the box and blow and then they put air into your lungs as well. So needless to say they will be putting him to sleep and putting him in the box to see what his lung function is as well as they will be doing another type of asperation test where they will force the stuff into him and see what happens (yet again another test that they will put him to sleep for) they also did a cilia test that looks to see if the cilia in his lung/nose move or if they are still becuase that will look like CF but they would have the tummy issues (which liam does but they are not concerned about it because he is in the 40th percentil which is down for his last weigh in 2 months ago he was in the 55th) so we still have no answers still no gen testing and I still have to watch and wait. We were asked why my son is not on Home O2 when hes sleeping becuase he doesnt sat well when he sleeps he sats 92 and lower and yet they didnt set up the home O2 ethier I dont get it?!?!

So all in all we still dont know I will post more when I know more but alot of the test that they want done will take more then 4 weeks to get back as well as they will all take time to book.

Thanks again for all the kind words and adivce I realy needed to talk to someone who understands!

Shawna
 

Liamsmommy

New member
Hi all I just wanted to say thank you to all for helping me understand sweat test and what I should be looking for with my son.

We went to Sick Kids hospital in Toronto yesterday and I am still not a head with anything. The doctors there have said that his sweat test are not normal (hes now had on at our local hospital and one at the childrens hospital) but they also still will not do the Gene testing they now want todo ANOTHER sweat test and they have a new test (they have had it for 2 years now) that is just like the lung function test for children over 5 and adults where you have to go into the box and blow and then they put air into your lungs as well. So needless to say they will be putting him to sleep and putting him in the box to see what his lung function is as well as they will be doing another type of asperation test where they will force the stuff into him and see what happens (yet again another test that they will put him to sleep for) they also did a cilia test that looks to see if the cilia in his lung/nose move or if they are still becuase that will look like CF but they would have the tummy issues (which liam does but they are not concerned about it because he is in the 40th percentil which is down for his last weigh in 2 months ago he was in the 55th) so we still have no answers still no gen testing and I still have to watch and wait. We were asked why my son is not on Home O2 when hes sleeping becuase he doesnt sat well when he sleeps he sats 92 and lower and yet they didnt set up the home O2 ethier I dont get it?!?!

So all in all we still dont know I will post more when I know more but alot of the test that they want done will take more then 4 weeks to get back as well as they will all take time to book.

Thanks again for all the kind words and adivce I realy needed to talk to someone who understands!

Shawna
 

Liamsmommy

New member
Hi all I just wanted to say thank you to all for helping me understand sweat test and what I should be looking for with my son.

We went to Sick Kids hospital in Toronto yesterday and I am still not a head with anything. The doctors there have said that his sweat test are not normal (hes now had on at our local hospital and one at the childrens hospital) but they also still will not do the Gene testing they now want todo ANOTHER sweat test and they have a new test (they have had it for 2 years now) that is just like the lung function test for children over 5 and adults where you have to go into the box and blow and then they put air into your lungs as well. So needless to say they will be putting him to sleep and putting him in the box to see what his lung function is as well as they will be doing another type of asperation test where they will force the stuff into him and see what happens (yet again another test that they will put him to sleep for) they also did a cilia test that looks to see if the cilia in his lung/nose move or if they are still becuase that will look like CF but they would have the tummy issues (which liam does but they are not concerned about it because he is in the 40th percentil which is down for his last weigh in 2 months ago he was in the 55th) so we still have no answers still no gen testing and I still have to watch and wait. We were asked why my son is not on Home O2 when hes sleeping becuase he doesnt sat well when he sleeps he sats 92 and lower and yet they didnt set up the home O2 ethier I dont get it?!?!

So all in all we still dont know I will post more when I know more but alot of the test that they want done will take more then 4 weeks to get back as well as they will all take time to book.

Thanks again for all the kind words and adivce I realy needed to talk to someone who understands!

Shawna
 

JazzysMom

New member
OH Shawana I am soooo sorry that you still havent gotten the next step that you want. I am as frustrated as you and I am not even the Mom lol! I dont know what else to say except keep pushing for it when you go back. **HUGS**
 

JazzysMom

New member
OH Shawana I am soooo sorry that you still havent gotten the next step that you want. I am as frustrated as you and I am not even the Mom lol! I dont know what else to say except keep pushing for it when you go back. **HUGS**
 

JazzysMom

New member
OH Shawana I am soooo sorry that you still havent gotten the next step that you want. I am as frustrated as you and I am not even the Mom lol! I dont know what else to say except keep pushing for it when you go back. **HUGS**
 

miesl

New member
This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.
 

miesl

New member
This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.
 

miesl

New member
This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.
 

Breezy

New member
Hey Shawna!

I practically grew up in Sick Kids Hospital in T.O.! I know the ladies who do the PFT's on 4B (i think that's the floor) very well! They are nice and you are in good hands. I wish you the best of luck!
 

Breezy

New member
Hey Shawna!

I practically grew up in Sick Kids Hospital in T.O.! I know the ladies who do the PFT's on 4B (i think that's the floor) very well! They are nice and you are in good hands. I wish you the best of luck!
 

Breezy

New member
Hey Shawna!

I practically grew up in Sick Kids Hospital in T.O.! I know the ladies who do the PFT's on 4B (i think that's the floor) very well! They are nice and you are in good hands. I wish you the best of luck!
 

sweetwhite30

New member
get a new doctor! you need one with all this extra non-sense testing. you need a genetic test done and you need to go elsewhere,they are using you for a guiny pig situation(experimentation situation)...you need better doctors!
 

sweetwhite30

New member
get a new doctor! you need one with all this extra non-sense testing. you need a genetic test done and you need to go elsewhere,they are using you for a guiny pig situation(experimentation situation)...you need better doctors!
 

sweetwhite30

New member
get a new doctor! you need one with all this extra non-sense testing. you need a genetic test done and you need to go elsewhere,they are using you for a guiny pig situation(experimentation situation)...you need better doctors!
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>miesl</b></i>

This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.</end quote></div>


it's not the doctor.... it's the socialized medicine.

docs get punished for not following protocols and ordering more expensive tests (genetic test being more expensive than a sweat test).
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>miesl</b></i>

This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.</end quote></div>


it's not the doctor.... it's the socialized medicine.

docs get punished for not following protocols and ordering more expensive tests (genetic test being more expensive than a sweat test).
 

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>miesl</b></i>

This sure as heck looks like "New Doctor Time" - the genetic panels (at least the smaller panels) aren't that expensive. Even the expensive full panel one has to be less than two visits with Dr. Naptime.</end quote></div>


it's not the doctor.... it's the socialized medicine.

docs get punished for not following protocols and ordering more expensive tests (genetic test being more expensive than a sweat test).
 

Liamsmommy

New member
We are from Canada so the insurance thing isnt an issue. They are pretty much using my son as a gini pig and i know that becuase they asked me if i would let the test results from his lung function test in a study becuase this is still so new with doing the test on babies. They are also spending big bucks on all the tests that are going to put my son out Im not sure why they wont just do the gen testing on him and get it over with but I dont know "im not the doctor" as my husband would say!

Thank you all for your kind words and I am still going to keep pushing for the gene testing.

Shawna
 

Liamsmommy

New member
We are from Canada so the insurance thing isnt an issue. They are pretty much using my son as a gini pig and i know that becuase they asked me if i would let the test results from his lung function test in a study becuase this is still so new with doing the test on babies. They are also spending big bucks on all the tests that are going to put my son out Im not sure why they wont just do the gen testing on him and get it over with but I dont know "im not the doctor" as my husband would say!

Thank you all for your kind words and I am still going to keep pushing for the gene testing.

Shawna
 
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