Emily65Roses
New member
That guy never should've been allowed to have children... even kids with cerebral palsy aren't stupid. That guy will deserve it if someday he gets partially paralyzed and people automatically think he's "stupid."
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Why are doctors so resistant to test for CF?
- Thread starter ReneeP
- Start date
Physicians aren't gods like everyone thinks they are.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
Physicians aren't gods like everyone thinks they are.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
Physicians aren't gods like everyone thinks they are.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
Everyone gets the best healthcare when they educate themselves to the best of their ability and partner with the doc... even the smartest doc in the world misses some things or is misinformed about other things.
Especially with a rare disease like CF - most docs are in their 40s & 50s, haven't heard about CF since they were 23 in med school, and now all of a sudden they have a kid who might have CF. they read up in their old med book and the only thing that's listed in there is a sweat test cuz it was published pre-1989.
that's just how it is. and if you think that it ends there, it doesn't. it's happening <b> right now </b> in your CF care if you aren't educating yourself about CF care as well.
M
Mommafirst
Guest
I don't know why its so difficult for some doctor's to write an order for the CF test -- perhaps its insurance driven, I don't know. I do know that your frustration seem quite warranted. I have a friend who couldn't get her doctor to write the order and kept making her feel like a silly overprotective mom who WANTs her kid to be sick, but she knew his symptoms were classic. Finally she called the CF center in her area herself and insisted they make an appontment for her without a referral -- they did and he has CF!!!<br>
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
M
Mommafirst
Guest
I don't know why its so difficult for some doctor's to write an order for the CF test -- perhaps its insurance driven, I don't know. I do know that your frustration seem quite warranted. I have a friend who couldn't get her doctor to write the order and kept making her feel like a silly overprotective mom who WANTs her kid to be sick, but she knew his symptoms were classic. Finally she called the CF center in her area herself and insisted they make an appontment for her without a referral -- they did and he has CF!!!<br>
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
M
Mommafirst
Guest
I don't know why its so difficult for some doctor's to write an order for the CF test -- perhaps its insurance driven, I don't know. I do know that your frustration seem quite warranted. I have a friend who couldn't get her doctor to write the order and kept making her feel like a silly overprotective mom who WANTs her kid to be sick, but she knew his symptoms were classic. Finally she called the CF center in her area herself and insisted they make an appontment for her without a referral -- they did and he has CF!!!<br>
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
<br>
I can imagine your frustration, Renee, I think all my nieces and nephews should be tested, even though none have symptoms at this point. It just is too easy to have sweat tests, and too important to miss!!!!
C
cfangel03
Guest
best advice: Make an appointment for a pulmonologist, pay for it yourself if you can not get a referral. A pulmonologist will definately prescribe a sweat test, and dna test as well. Pediatricians are just not qualified or educacted on diseases.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
C
cfangel03
Guest
best advice: Make an appointment for a pulmonologist, pay for it yourself if you can not get a referral. A pulmonologist will definately prescribe a sweat test, and dna test as well. Pediatricians are just not qualified or educacted on diseases.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
C
cfangel03
Guest
best advice: Make an appointment for a pulmonologist, pay for it yourself if you can not get a referral. A pulmonologist will definately prescribe a sweat test, and dna test as well. Pediatricians are just not qualified or educacted on diseases.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
Leah Orr
mother of 3 beautiful girls, youngest age 3 has cf, found out by amneo at 18 weeks pregnant. She's doing beautifully. No problems. Early intervention is imperative. Once damage has been done to the lungs, it can not be fixed.
2
2perfectboys
Guest
Renee,
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
2
2perfectboys
Guest
Renee,
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
2
2perfectboys
Guest
Renee,
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
R they only going to military doctors, that could explain a few things?
They only advice I could give u is to use tough love, when your SIL calls u whinning about her son, just tell her u don't want to hear about it until u gets a CF test. That sounds bad, but she sounds pitiful for not wanting to be an advocate for her child and do the right thing. Doctors are human. They do not make enough money and they are not all the most intelligent people in world. While they know way more than I do, becasue they have went to school 10 plus years and this is their job everyday, they still don't live with your child, nor know everything about them unless u tell them, which your sister may not be telling the doctors all.
Lori
One thought for people who can't get their doctors to order tests... When we were having some issues years ago with our doctor, our attorney told us to ask the doctor to put that in writing "Patient/Parent requested such and such a test and we declined because..." Majority of the time they're going to to do test 'cuz they don't want to have it come back and bite them in the butt. <img src="i/expressions/face-icon-small-smile.gif" border="0">
One thought for people who can't get their doctors to order tests... When we were having some issues years ago with our doctor, our attorney told us to ask the doctor to put that in writing "Patient/Parent requested such and such a test and we declined because..." Majority of the time they're going to to do test 'cuz they don't want to have it come back and bite them in the butt. <img src="i/expressions/face-icon-small-smile.gif" border="0">
One thought for people who can't get their doctors to order tests... When we were having some issues years ago with our doctor, our attorney told us to ask the doctor to put that in writing "Patient/Parent requested such and such a test and we declined because..." Majority of the time they're going to to do test 'cuz they don't want to have it come back and bite them in the butt. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
One thought for people who can't get their doctors to order tests... When we were having some issues years ago with our doctor, our attorney told us to ask the doctor to put that in writing "Patient/Parent requested such and such a test and we declined because..." Majority of the time they're going to to do test 'cuz they don't want to have it come back and bite them in the butt. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>
that is REALLY smart... good tip!
One thought for people who can't get their doctors to order tests... When we were having some issues years ago with our doctor, our attorney told us to ask the doctor to put that in writing "Patient/Parent requested such and such a test and we declined because..." Majority of the time they're going to to do test 'cuz they don't want to have it come back and bite them in the butt. <img src="i/expressions/face-icon-small-smile.gif" border="0"></end quote></div>
that is REALLY smart... good tip!