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Arrg!
- Thread starter hhildema
- Start date
First let me assure you that you are absolutely justified in seeking testing for your child.
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
First let me assure you that you are absolutely justified in seeking testing for your child.
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
First let me assure you that you are absolutely justified in seeking testing for your child.
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
Doctors are often this way. Is your daughter growing well and meeting all her developmental milestones? Many doctors have a hard time recognizing CF even when a child is not growing as they ideally should due to digestive troubles so you should absolutely expect them to be doubt that it is CF if your child is growing and developing within the very wide range of what is considered normal. Unfortunatly for doctors all childern are different and what may be normal for one child is not necessarily normal for another so doctors tend to miss things due to the fact that they do not know their patients well enough to know what exactly is normal for this person/child.
You are the mother and you know your child better than anyone (except for maybe your child herself) so your doctor should take your concerns seriously if you suspect something might be wrong. I think sometimes new doctors suspect a child has CF and it turns out that they don't. This probably causes them to be more conservative in their future assesments and contributes to the prevalence of the attitude you are describing among doctors. After all the frequency within the general population is relatively rare. Even if your sister is a carrier the chance that your child will have cf is something like 1 in 200. (Assuming the carrier frequency for your partner is 1 in 25.) That is probably what your doc is thinking...
Let me again stress that you did the right thing. It must have been so hard to make this request and to be told by the doctor that he doubts it is an issue in your case. Especially with your daughters symptoms! You must be feeling so frightened and conflicted! (not to mention angry)
Anyway i wish you the best of luck! Please let us know what happens either way!
Our pediatrician was so convinced our daughter did NOT have CF that when the place he sent us to did two positive sweat tests he told us we should DISREGARD those results and he sent us to a different place where they "did them all the time" and told us we could actually rely on the results from the new place.
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Our pediatrician was so convinced our daughter did NOT have CF that when the place he sent us to did two positive sweat tests he told us we should DISREGARD those results and he sent us to a different place where they "did them all the time" and told us we could actually rely on the results from the new place.
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Our pediatrician was so convinced our daughter did NOT have CF that when the place he sent us to did two positive sweat tests he told us we should DISREGARD those results and he sent us to a different place where they "did them all the time" and told us we could actually rely on the results from the new place.
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Then when that test came back positive, he told me "well, she is the healthiest CF kid I have ever seen." WTH does that mean? I'm still furious with him.
I shudder to think how much longer my poor daughter would have gone undiagnosed if she had gotten false negatives on the sweat tests.........she had fallen off the growth charts, had horrible tummy aches, oily BMs, and now that I know what to look for, definite clubbing of her fingers. Yet he was too blinded by his assumption that I was an overwrought mother to see any of this.
I think you are doing the right thing to press this issue. Good luck and I'm hoping for the very best for you.
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Emily65Roses
New member
Wow, to ktsmom... that old doctor is a QUACK if I ever heard of one. One of the things you learn fairly early on, is that with CF tests... there is such a thing as a false negative, but there is <b>NO SUCH THING as a false positive</b>. I'm glad you went somewhere else and found out, but jeeezz what a moron.
Emily65Roses
New member
Wow, to ktsmom... that old doctor is a QUACK if I ever heard of one. One of the things you learn fairly early on, is that with CF tests... there is such a thing as a false negative, but there is <b>NO SUCH THING as a false positive</b>. I'm glad you went somewhere else and found out, but jeeezz what a moron.
Emily65Roses
New member
Wow, to ktsmom... that old doctor is a QUACK if I ever heard of one. One of the things you learn fairly early on, is that with CF tests... there is such a thing as a false negative, but there is <b>NO SUCH THING as a false positive</b>. I'm glad you went somewhere else and found out, but jeeezz what a moron.
I also had one of those pediatricians (well, several drs actually) who thought I was nuts for worrying so much about my daughter's health. I was blamed for everything basically. The loose greasy bm's were because I was breastfeeding, the fact that she wasn't gaining weight was because I was breastfeeding and she wasn't getting enough food (despite the fact that she nursed around the clock and refused all other food)... it went on and on. I could go on for hours telling the horror stories of how I was blamed for all her health problems. They did everything but send child protection services after me. They told me I was spoiling her and causing her health problems. I, on the advice of the pediatrician, finally refused to nurse her for a whole day and kept trying to force her to eat other foods. Everytime she would attempt anything else, she would gag and throw up. She couldn't tolerate anything else. And even after being hospitalized multiple times with pneumonia, uncontrollable wheezing, a blood sugar test result of 360 when she was 2 years old, iron levels so low that they wanted to give her blood, etc, the pediatrician still told me there was no way she had CF. I finally went in and refused to leave the office until he gave me a prescription to go have the sweat test done. He argued with me but finally caved in just to get me off his back. What really ticked me off was when I told him I thought she had CF his first and only question to me was "Are you and your husband related?"... Within 3 months of her diagnosis, she was a totally different child. She was almost 3 when she was diagnosed, is now going to be 12 this Friday and has not been in the hospital since her 3rd birthday!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!
I also had one of those pediatricians (well, several drs actually) who thought I was nuts for worrying so much about my daughter's health. I was blamed for everything basically. The loose greasy bm's were because I was breastfeeding, the fact that she wasn't gaining weight was because I was breastfeeding and she wasn't getting enough food (despite the fact that she nursed around the clock and refused all other food)... it went on and on. I could go on for hours telling the horror stories of how I was blamed for all her health problems. They did everything but send child protection services after me. They told me I was spoiling her and causing her health problems. I, on the advice of the pediatrician, finally refused to nurse her for a whole day and kept trying to force her to eat other foods. Everytime she would attempt anything else, she would gag and throw up. She couldn't tolerate anything else. And even after being hospitalized multiple times with pneumonia, uncontrollable wheezing, a blood sugar test result of 360 when she was 2 years old, iron levels so low that they wanted to give her blood, etc, the pediatrician still told me there was no way she had CF. I finally went in and refused to leave the office until he gave me a prescription to go have the sweat test done. He argued with me but finally caved in just to get me off his back. What really ticked me off was when I told him I thought she had CF his first and only question to me was "Are you and your husband related?"... Within 3 months of her diagnosis, she was a totally different child. She was almost 3 when she was diagnosed, is now going to be 12 this Friday and has not been in the hospital since her 3rd birthday!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!
I also had one of those pediatricians (well, several drs actually) who thought I was nuts for worrying so much about my daughter's health. I was blamed for everything basically. The loose greasy bm's were because I was breastfeeding, the fact that she wasn't gaining weight was because I was breastfeeding and she wasn't getting enough food (despite the fact that she nursed around the clock and refused all other food)... it went on and on. I could go on for hours telling the horror stories of how I was blamed for all her health problems. They did everything but send child protection services after me. They told me I was spoiling her and causing her health problems. I, on the advice of the pediatrician, finally refused to nurse her for a whole day and kept trying to force her to eat other foods. Everytime she would attempt anything else, she would gag and throw up. She couldn't tolerate anything else. And even after being hospitalized multiple times with pneumonia, uncontrollable wheezing, a blood sugar test result of 360 when she was 2 years old, iron levels so low that they wanted to give her blood, etc, the pediatrician still told me there was no way she had CF. I finally went in and refused to leave the office until he gave me a prescription to go have the sweat test done. He argued with me but finally caved in just to get me off his back. What really ticked me off was when I told him I thought she had CF his first and only question to me was "Are you and your husband related?"... Within 3 months of her diagnosis, she was a totally different child. She was almost 3 when she was diagnosed, is now going to be 12 this Friday and has not been in the hospital since her 3rd birthday!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!
I guess the moral of my story is that no matter how much knowledge a doctor may have, no one knows their child like their parents... always, always, always follow your gut! And good for you for fighting for your child!