I was just rereading what you wrote... just wondering why you can't request your own genetic testing and pay your self??? We are new to all this and haven't had the cf gen tests yet. But I do recall my dad having testing done for another scary gen disease that runs in our family "sigh" I think it was a small out of pocket expense?
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Anyone here from Ontario Canada???
- Thread starter Liamsmommy
- Start date
Emeraldmirror
New member
I am from ontario i would definitely go to sick kids in toronto... when i was a baby they did sweat tests for me 5 times in windsor before they finally said she "might" have a "hint" of cf you might want to take her to toronto... so i would definitely take him there, they are the best and if they have to they will do a dna test on him too
Ashley 22 w/cf
Ashley 22 w/cf
Emeraldmirror
New member
I am from ontario i would definitely go to sick kids in toronto... when i was a baby they did sweat tests for me 5 times in windsor before they finally said she "might" have a "hint" of cf you might want to take her to toronto... so i would definitely take him there, they are the best and if they have to they will do a dna test on him too
Ashley 22 w/cf
Ashley 22 w/cf
Emeraldmirror
New member
I am from ontario i would definitely go to sick kids in toronto... when i was a baby they did sweat tests for me 5 times in windsor before they finally said she "might" have a "hint" of cf you might want to take her to toronto... so i would definitely take him there, they are the best and if they have to they will do a dna test on him too
Ashley 22 w/cf
Ashley 22 w/cf
lovemygirl
New member
Shawna,
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
lovemygirl
New member
Shawna,
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
lovemygirl
New member
Shawna,
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
Have you contacted the Foundation? I live in Quebec and the couple of times we've had issues the foundation in Toront has been a great support. Their webiste is www.cysticfibrosis.ca and you can find their 800 phone number on the site.
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week.
Don't give up! A parent's instinct is usually right and if you feel there is something wrong then you must INSIST until you feel you have done everything. If it isn't CF then maybe there is something else they are missing, and you can't give up.
Not sure about this but....If you have private insurance through an employer verify with them and see if they will cover the costs of getting it done somewhere. I'm not sure if this is an option in Ontario but it is worth looking into.
Keep us posted
Liamsmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lovemygirl</b></i>
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
Liamsmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lovemygirl</b></i>
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
Liamsmommy
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lovemygirl</b></i>
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
My other suggestion is going through a pediatrician. Before our daughter was diagnosed I changed pediatrican's on a weekly basis until I found someone that would agree there was a problem. If your pediatrician requests testing then I don't see how the hospital can refuse. The hospitals in Montreal are the same, as what you seem to be experiencing. We took her to emergency 3 or 4 times and they wouldn't do anything, until a pediatrican requested testing. She was then diagnosed in a week
Keep us posted</end quote></div>
The problem we are having is getting a peds. to order the test.....He has only had the one sweat test done and it didnt take that long for them to do it I think they were in his room for about 15 min and we had the results in less then an hour he wasnt drinking all that much he was just about to have an IV put in because he wasnt drinking enough and from what I have been reading that will give a false neg. reading but they still wont do any ferther testing or put a refural into another hospital. We have seen 4 peds. docs who all say the same thing "we just dont know what wrong lets try this" but none will look into more testing.......I just need to find away to go around the docs here and get to sick kids! and Im not sure about how to do it! Our GP had put in a refural and they got a respons of "we need the refural made by a peds"
any thoughts??
Thanks
Shawna
That sweat test sounds shoddy to me. Our GP sent us right to the cf ped. The cf ped told us that if a lab doesn't do more that 100 or so sweat tests a year they probably shouldn't be doing them. I think your next move may have to be a Social worker, especially the sw from the cf clinic. They know all the ins and outs to do with gov't and hospital workings??
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
That sweat test sounds shoddy to me. Our GP sent us right to the cf ped. The cf ped told us that if a lab doesn't do more that 100 or so sweat tests a year they probably shouldn't be doing them. I think your next move may have to be a Social worker, especially the sw from the cf clinic. They know all the ins and outs to do with gov't and hospital workings??
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
That sweat test sounds shoddy to me. Our GP sent us right to the cf ped. The cf ped told us that if a lab doesn't do more that 100 or so sweat tests a year they probably shouldn't be doing them. I think your next move may have to be a Social worker, especially the sw from the cf clinic. They know all the ins and outs to do with gov't and hospital workings??
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
Also who ordered the first test?? maybe pester them to do another 1 or 2 or 3...
Liamsmommy
New member
You know I never even thought of getting a social worker involed but now that you mention it I my going to call my Daughters and see if she has any Ideas! Thanks for the thought!
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
Liamsmommy
New member
You know I never even thought of getting a social worker involed but now that you mention it I my going to call my Daughters and see if she has any Ideas! Thanks for the thought!
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
Liamsmommy
New member
You know I never even thought of getting a social worker involed but now that you mention it I my going to call my Daughters and see if she has any Ideas! Thanks for the thought!
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
The first doc who ordered the sweat test is the same peds doc that is determind that it rules out CF. She seem to not be to concerned about it and yet she still has no clue what is wrong with my son. The person who came up from the lab to do the test had to read the directions on the box to tell her how to do it! She told me "well its not every often we get asked to doone of theses"
Thanks agian to all who have responded
Shawna
lovemygirl
New member
Shawna,
I can tell you that in a period of 6 weeks we saw about 5 pediatricans, went to a local health care facility on a weekly basis and emergency twice, and each time we were sent home. We were persistant that there was something wrong until someone would listen. Keep changing dr's until you find someone that will listen, or take her to your family dr. If your own dr. has known you for a long time then perhaps he/she can help.
I still say call the Foundation and ask for help. They are a wonderful resource and can likely give you some direction. The worst they can say is "sorry we can't help you", but I'm sure they will try.
I don't think the CF clinic can help you unless you have had a positive diagnosis, but you won't know until you try.
I can tell you that in a period of 6 weeks we saw about 5 pediatricans, went to a local health care facility on a weekly basis and emergency twice, and each time we were sent home. We were persistant that there was something wrong until someone would listen. Keep changing dr's until you find someone that will listen, or take her to your family dr. If your own dr. has known you for a long time then perhaps he/she can help.
I still say call the Foundation and ask for help. They are a wonderful resource and can likely give you some direction. The worst they can say is "sorry we can't help you", but I'm sure they will try.
I don't think the CF clinic can help you unless you have had a positive diagnosis, but you won't know until you try.