Quirky Question

jmom · Jun 30, 2011

I posted here several months back, and am still seeking diagnosis for my children. Seems like an ongoing nightmare that I won't waste your time with. But I will forever be grateful for the advice and support this forum group provided me when I had oh, so many questions. Since I am still dealing with doctors, some of which know less than they should (hope that didn't sound arrogant or pessimistic) about the diseases we are looking into, I have many times been tempted to print up and show them the thoughts, opinions, and knowledge you all have brought to the table. Let's face it, in some ways you parents have more expertise in this disease than the doctors, because you LIVE with it. And in order to provide the best care possible for your children, you have found a way to network a wealth of information - all coming in to one place. This cannot be duplicated in a doctor's office. All that being said, when a doctor says to me, for example, "The fecal elastase test is the gold standard for PI, and I trust the results 100%." I still feel awkward saying, in return, "Well, actually, I know of a number of children whose parents claim that even though they have a solid diagnosis of CF and PI, sometimes the elastase comes out normal (false negative). " Or, "Even though our sweat test came out high normal, there is a forum group of parents (with kids with CF) who think we should get the genetic testing anyway." Do doctors resent us parents "ganging up" our knowledge in a way sometimes contrary to their gut instinct? After all, who am I to "present" to a doctor something that I think HE should know about but doesn't? Do doctors get annoyed by those of us who try to "diagnose by poking around on internet forums?"
re"> Please don't get me wrong; I love this group and don't know where I'd be without all your help in the past. You are amazing people with an amazing wealth of information. I just was wondering IF and HOW you present this forum's advice to your doctors. Because I'd love to have the guts to do it. I think highly of you all and respect your knowledge immensely.

jmom · Jun 30, 2011

I posted here several months back, and am still seeking diagnosis for my children. Seems like an ongoing nightmare that I won't waste your time with. But I will forever be grateful for the advice and support this forum group provided me when I had oh, so many questions. Since I am still dealing with doctors, some of which know less than they should (hope that didn't sound arrogant or pessimistic) about the diseases we are looking into, I have many times been tempted to print up and show them the thoughts, opinions, and knowledge you all have brought to the table. Let's face it, in some ways you parents have more expertise in this disease than the doctors, because you LIVE with it. And in order to provide the best care possible for your children, you have found a way to network a wealth of information - all coming in to one place. This cannot be duplicated in a doctor's office. All that being said, when a doctor says to me, for example, "The fecal elastase test is the gold standard for PI, and I trust the results 100%." I still feel awkward saying, in return, "Well, actually, I know of a number of children whose parents claim that even though they have a solid diagnosis of CF and PI, sometimes the elastase comes out normal (false negative). " Or, "Even though our sweat test came out high normal, there is a forum group of parents (with kids with CF) who think we should get the genetic testing anyway." Do doctors resent us parents "ganging up" our knowledge in a way sometimes contrary to their gut instinct? After all, who am I to "present" to a doctor something that I think HE should know about but doesn't? Do doctors get annoyed by those of us who try to "diagnose by poking around on internet forums?"
re"> Please don't get me wrong; I love this group and don't know where I'd be without all your help in the past. You are amazing people with an amazing wealth of information. I just was wondering IF and HOW you present this forum's advice to your doctors. Because I'd love to have the guts to do it.I think highly of you all and respect your knowledge immensely.

jmom · Jun 30, 2011

I posted here several months back, and am still seeking diagnosis for my children. Seems like an ongoing nightmare that I won't waste your time with. But I will forever be grateful for the advice and support this forum group provided me when I had oh, so many questions. Since I am still dealing with doctors, some of which know less than they should (hope that didn't sound arrogant or pessimistic) about the diseases we are looking into, I have many times been tempted to print up and show them the thoughts, opinions, and knowledge you all have brought to the table. Let's face it, in some ways you parents have more expertise in this disease than the doctors, because you LIVE with it. And in order to provide the best care possible for your children, you have found a way to network a wealth of information - all coming in to one place. This cannot be duplicated in a doctor's office. All that being said, when a doctor says to me, for example, "The fecal elastase test is the gold standard for PI, and I trust the results 100%." I still feel awkward saying, in return, "Well, actually, I know of a number of children whose parents claim that even though they have a solid diagnosis of CF and PI, sometimes the elastase comes out normal (false negative). " Or, "Even though our sweat test came out high normal, there is a forum group of parents (with kids with CF) who think we should get the genetic testing anyway." Do doctors resent us parents "ganging up" our knowledge in a way sometimes contrary to their gut instinct? After all, who am I to "present" to a doctor something that I think HE should know about but doesn't? Do doctors get annoyed by those of us who try to "diagnose by poking around on internet forums?"
re"> Please don't get me wrong; I love this group and don't know where I'd be without all your help in the past. You are amazing people with an amazing wealth of information. I just was wondering IF and HOW you present this forum's advice to your doctors. Because I'd love to have the guts to do it.I think highly of you all and respect your knowledge immensely.

rubyroselee · Jun 30, 2011

I definitely bring up information that I find out on here with my CF doctor. My doctor had no idea that reactive hypoglycemia was an issue for CF patients. When I came on this forum and found SEVERAL people with the same issue, I told my doctor. I don't know if it is annoying to him or not, but this forum gave me a great base to work from. I was able to network and find some valuable information (solid evidence, medical studies, etc) that I then shared with my CF doctor. Then he later apologized to me for not knowing about this somewhat common issue in CF and now he's going to inform his colleagues, as they did not know about it.

I know that doctors definitely do not know everything. They are not the ones living with the disease. They are very knowledeable and definitely great at taking care of us, but we are the ones with the real-life experiences.

rubyroselee · Jun 30, 2011

I definitely bring up information that I find out on here with my CF doctor. My doctor had no idea that reactive hypoglycemia was an issue for CF patients. When I came on this forum and found SEVERAL people with the same issue, I told my doctor. I don't know if it is annoying to him or not, but this forum gave me a great base to work from. I was able to network and find some valuable information (solid evidence, medical studies, etc) that I then shared with my CF doctor. Then he later apologized to me for not knowing about this somewhat common issue in CF and now he's going to inform his colleagues, as they did not know about it.

I know that doctors definitely do not know everything. They are not the ones living with the disease. They are very knowledeable and definitely great at taking care of us, but we are the ones with the real-life experiences.

rubyroselee · Jun 30, 2011

I definitely bring up information that I find out on here with my CF doctor. My doctor had no idea that reactive hypoglycemia was an issue for CF patients. When I came on this forum and found SEVERAL people with the same issue, I told my doctor. I don't know if it is annoying to him or not, but this forum gave me a great base to work from. I was able to network and find some valuable information (solid evidence, medical studies, etc) that I then shared with my CF doctor. Then he later apologized to me for not knowing about this somewhat common issue in CF and now he's going to inform his colleagues, as they did not know about it.
 
 I know that doctors definitely do not know everything. They are not the ones living with the disease. They are very knowledeable and definitely great at taking care of us, but we are the ones with the real-life experiences.

Mistyjo · Jun 30, 2011

I just told our doctor yesterday about this forum. My daughter is failure to thrive and her fecal elestase was normal so I asked him about the pancreatic test done with scope and told him there are families on here that has had a normal fecal elestase and the scope test showed mild PI. He agreed that can happen and is going to start my daughter on enzymes to see if they help her gain weight, if they work then he is going to do the scope where they stimulate the pancreas. He actually listened to me. I am blessed with a good cf specialist!
I also told him what was said regarding a diagnosis of cystic fibrosis metabolic syndrome and the concerns with quality of care and insurance coverage. He said if she develops any symptoms that require treatment her diagnosis will be changed to cf. If she has anymore positive test her diagnosis will change to cf. If the enzymes work to help her gain weight her diagnosis will change to cf. He just can't diagnose her with cf b/c the colon tissue test hasn't been approved yet in the US as a diagnostic test for cf. He said probably next year it will be approved to be a diagnostic test for cf.

Mistyjo · Jun 30, 2011

I just told our doctor yesterday about this forum. My daughter is failure to thrive and her fecal elestase was normal so I asked him about the pancreatic test done with scope and told him there are families on here that has had a normal fecal elestase and the scope test showed mild PI. He agreed that can happen and is going to start my daughter on enzymes to see if they help her gain weight, if they work then he is going to do the scope where they stimulate the pancreas. He actually listened to me. I am blessed with a good cf specialist!
I also told him what was said regarding a diagnosis of cystic fibrosis metabolic syndrome and the concerns with quality of care and insurance coverage. He said if she develops any symptoms that require treatment her diagnosis will be changed to cf. If she has anymore positive test her diagnosis will change to cf. If the enzymes work to help her gain weight her diagnosis will change to cf. He just can't diagnose her with cf b/c the colon tissue test hasn't been approved yet in the US as a diagnostic test for cf. He said probably next year it will be approved to be a diagnostic test for cf.

Mistyjo · Jun 30, 2011

I just told our doctor yesterday about this forum. My daughter is failure to thrive and her fecal elestase was normal so I asked him about the pancreatic test done with scope and told him there are families on here that has had a normal fecal elestase and the scope test showed mild PI. He agreed that can happen and is going to start my daughter on enzymes to see if they help her gain weight, if they work then he is going to do the scope where they stimulate the pancreas. He actually listened to me. I am blessed with a good cf specialist!
 I also told him what was said regarding a diagnosis of cystic fibrosis metabolic syndrome and the concerns with quality of care and insurance coverage. He said if she develops any symptoms that require treatment her diagnosis will be changed to cf. If she has anymore positive test her diagnosis will change to cf. If the enzymes work to help her gain weight her diagnosis will change to cf. He just can't diagnose her with cf b/c the colon tissue test hasn't been approved yet in the US as a diagnostic test for cf. He said probably next year it will be approved to be a diagnostic test for cf.

hmw · Jun 30, 2011

Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is such an isolating condition, since those that have it can't really be around each other.

One of her drs knows I do a lot of research and likes this. It's never come up with the other. I know in my case I wouldn't feel comfortable printing off a thread to show them to prove my point about something. I am not sure how seriously either would take it. However, what I have done is take advantage of the knowledge of the people here... people post links to articles and studies all the time when topics like that come up, and printing something like *that* out is something I have done.

I do agree that people who live with any serious health condition are going to know it and understand it on a different level than the doctors just by virtue of the fact that they live it every day. But how we share this info is still a weird area that we have to tread with caution, and it differs depending on what our relationship is like with our team.

hmw · Jun 30, 2011

Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is such an isolating condition, since those that have it can't really be around each other.

One of her drs knows I do a lot of research and likes this. It's never come up with the other. I know in my case I wouldn't feel comfortable printing off a thread to show them to prove my point about something. I am not sure how seriously either would take it. However, what I have done is take advantage of the knowledge of the people here... people post links to articles and studies all the time when topics like that come up, and printing something like *that* out is something I have done.

I do agree that people who live with any serious health condition are going to know it and understand it on a different level than the doctors just by virtue of the fact that they live it every day. But how we share this info is still a weird area that we have to tread with caution, and it differs depending on what our relationship is like with our team.

hmw · Jun 30, 2011

Emily's social worker asks on a regular basis what kind of support system I have when it comes to dealing with CF and i have told her about this website. I've told her how much (reputable) online resources have been able to help in becoming informed about CF and in coping with it- since CF is such an isolating condition, since those that have it can't really be around each other.
 
 One of her drs knows I do a lot of research and likes this. It's never come up with the other. I know in my case I wouldn't feel comfortable printing off a thread to show them to prove my point about something. I am not sure how seriously either would take it. However, what I have done is take advantage of the knowledge of the people here... people post links to articles and studies all the time when topics like that come up, and printing something like *that* out is something I have done.
 
 I do agree that people who live with any serious health condition are going to know it and understand it on a different level than the doctors just by virtue of the fact that they live it every day. But how we share this info is still a weird area that we have to tread with caution, and it differs depending on what our relationship is like with our team.

JORDYSMOM · Jun 30, 2011

Mistyjo's doc nailed the problem. There are "acceptable standards" that doctors have to work within. Why? Because of malpractice insurance. All of these "rules" have been developed because of lawsuits. Doctors are limited on what they can & can't do, and the order in which they must do it.
 
I absolutely agree that some docs are not as knowledgeable as they should be where CF is concerned. However, I think sometimes the doctor feels that the issues are so complex that the average parent/patient won't be able to comprehend it, or they don't want to overwhelm us. They don't discuss things in depth, so we just assume they haven't thought of it or don't know about it. I think most doctors want to do the best job possible to help their patients, and some do read forums like this. I think we as a community are a very valuable resource, and it's great when doctors are open to discussion.
 
I say bring things up to your doctor. Not in a condescending way of course, but let him/her know that you have ideas you'd like to talk about. You and your doctor must work as a team.
 
Stacey

JORDYSMOM · Jun 30, 2011

Mistyjo's doc nailed the problem. There are "acceptable standards" that doctors have to work within. Why? Because of malpractice insurance. All of these "rules" have been developed because of lawsuits. Doctors are limited on what they can & can't do, and the order in which theymust do it.

I absolutely agree that some docs are not as knowledgeable as they should be where CF is concerned. However, I think sometimes the doctor feels that the issues are so complex that the average parent/patient won't be able to comprehend it, or they don't want to overwhelm us. They don't discuss things in depth, so we just assume they haven't thought of it or don't know about it. I think most doctors want to do the best job possible to help their patients, and some do read forums like this. I think we as a community are a very valuable resource, and it's great when doctors are open to discussion.

I say bring things up to your doctor. Not in a condescending way of course, but let him/her know that you have ideas you'd like to talk about. You and your doctor must work as a team.

Stacey

JORDYSMOM · Jun 30, 2011

Mistyjo's doc nailed the problem. There are "acceptable standards" that doctors have to work within. Why? Because of malpractice insurance. All of these "rules" have been developed because of lawsuits. Doctors are limited on what they can & can't do, and the order in which theymust do it.

I absolutely agree that some docs are not as knowledgeable as they should be where CF is concerned. However, I think sometimes the doctor feels that the issues are so complex that the average parent/patient won't be able to comprehend it, or they don't want to overwhelm us. They don't discuss things in depth, so we just assume they haven't thought of it or don't know about it. I think most doctors want to do the best job possible to help their patients, and some do read forums like this. I think we as a community are a very valuable resource, and it's great when doctors are open to discussion.

I say bring things up to your doctor. Not in a condescending way of course, but let him/her know that you have ideas you'd like to talk about. You and your doctor must work as a team.

Stacey

Mommafirst · Jun 30, 2011

I have had our CF doctor tell me that I'm "more knowledgeable than most of his interns." I have then told him about how much research I have done and my involvement on this board. I do think that many doctors would be bothered by a patient "undermining" their opinions by bringing collaborative parent or patient experiences to them as an "I told you so" moment. However,when done with respect for the doctor's expertise and used as informed questions, I don't think we should avoid what we know in an effort to not upset the docs.

If you trust your doctor and believe that they are well informed, but that they can't know everything....they are just people, than I think its reasonable to bring them information you've obtained from a place like this.

One thing I keep in mind is that our doctors....even those that are CF specialist...still see a wide variety of patients every day. They see kids with mild allergies or asthma, and they see kids with severe pulmonary issues who have trachs, etc. They see CF patients at end stage CF. So what seems like a HUGE issue to us and our kid, may seem minor to them in comparison to all the severe issues they see every day. This isn't to say that they shouldn't be concerned about foundational issues or shouldn't be empathetic for our kids' issues, but we have to realize that they come with a very different perspective about this disease than we do....and if we have very specific information related to an issue they see infrequently or never, than we are obliged to share and force the issue.

Mommafirst · Jun 30, 2011

I have had our CF doctor tell me that I'm "more knowledgeable than most of his interns." I have then told him about how much research I have done and my involvement on this board. I do think that many doctors would be bothered by a patient "undermining" their opinions by bringing collaborative parent or patient experiences to them as an "I told you so" moment. However,when done with respect for the doctor's expertise and used as informed questions, I don't think we should avoid what we know in an effort to not upset the docs.

If you trust your doctor and believe that they are well informed, but that they can't know everything....they are just people, than I think its reasonable to bring them information you've obtained from a place like this.

One thing I keep in mind is that our doctors....even those that are CF specialist...still see a wide variety of patients every day. They see kids with mild allergies or asthma, and they see kids with severe pulmonary issues who have trachs, etc. They see CF patients at end stage CF. So what seems like a HUGE issue to us and our kid, may seem minor to them in comparison to all the severe issues they see every day. This isn't to say that they shouldn't be concerned about foundational issues or shouldn't be empathetic for our kids' issues, but we have to realize that they come with a very different perspective about this disease than we do....and if we have very specific information related to an issue they see infrequently or never, than we are obliged to share and force the issue.

Mommafirst · Jun 30, 2011

I have had our CF doctor tell me that I'm "more knowledgeable than most of his interns." I have then told him about how much research I have done and my involvement on this board. I do think that many doctors would be bothered by a patient "undermining" their opinions by bringing collaborative parent or patient experiences to them as an "I told you so" moment. However,when done with respect for the doctor's expertise and used as informed questions, I don't think we should avoid what we know in an effort to not upset the docs.
 
 If you trust your doctor and believe that they are well informed, but that they can't know everything....they are just people, than I think its reasonable to bring them information you've obtained from a place like this.
 
 One thing I keep in mind is that our doctors....even those that are CF specialist...still see a wide variety of patients every day. They see kids with mild allergies or asthma, and they see kids with severe pulmonary issues who have trachs, etc. They see CF patients at end stage CF. So what seems like a HUGE issue to us and our kid, may seem minor to them in comparison to all the severe issues they see every day. This isn't to say that they shouldn't be concerned about foundational issues or shouldn't be empathetic for our kids' issues, but we have to realize that they come with a very different perspective about this disease than we do....and if we have very specific information related to an issue they see infrequently or never, than we are obliged to share and force the issue.

jmom · Jun 30, 2011

Heather, I think you summed this up well for me. All of you had some great insight into how to handle discussions with our doctors. Yes, Harriet, I agree that this needs to be done with strategic respect for the doctor, but there is a way to pull it off.

jmom · Jun 30, 2011

Heather, I think you summed this up well for me. All of you had some great insight into how to handle discussions with our doctors. Yes, Harriet, I agree that this needs to be done with strategic respect for the doctor, but there is a way to pull it off.

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