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Quirky Question
- Thread starter jmom
- Start date
I think, if done appropriately, it's fine to talk about this. Just remember that you're not questioning them, but trying to get the best care possible for your loved one.
The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
I think, if done appropriately, it's fine to talk about this. Just remember that you're not questioning them, but trying to get the best care possible for your loved one.
The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
I think, if done appropriately, it's fine to talk about this. Just remember that you're not questioning them, but trying to get the best care possible for your loved one.
<br />
<br />The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
<br />
<br />
<br />The information here can be quite helpful. Information that we received on this site led to a change in procedure at the NICU where my son stayed for a month. He had an ileostomy done and we were having a miserable time with the bag when he came home. Someone on here told us about the powder & how to use it. After great success with that (and dial soap - thanks to the wound care specialist), I asked our primary NICU nurse (who's now a friend) why they didn't use it. She tried it out and also had great success and to the benefit of all stoma kids, the NICU now uses the powder & dial soap - leading to fewer bag changes for the babies!
<br />
<P>We have also been in the testing process for 10 months now. The tactful way I brought up information from this site to the CF specialist was to say that I know now all that I read on-line is credible, but this is what I found the the research studies I found to support what I read on-line. I present it as a dilemma I am in and that I would like him to help me sort out the on-line fact from fiction. I have found that I was well received and I have learned which doctor's I respect by which doctors admit that they don't know everything. </P>
<P> </P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P> </P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
<P> </P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P> </P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
<P>We have also been in the testing process for 10 months now. The tactful way I brought up information from this site to the CF specialist was to say that I know now all that I read on-line is credible, but this is what I found the the research studies I found to support what I read on-line. I present it as a dilemma I am in and that I would like him to help me sort out the on-line fact from fiction. I have found that I was well received and I have learned which doctor's I respect by which doctors admit that they don't know everything. </P>
<P></P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P></P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
<P></P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P></P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
<P><BR>We have also been in the testing process for 10 months now. The tactful way I brought up information from this site to the CF specialist was to say that I know now all that I read on-line is credible, but this is what I found the the research studies I found to support what I read on-line. I present it as a dilemma I am in and that I would like him to help me sort out the on-line fact from fiction. I have found that I was well received and I have learned which doctor's I respect by which doctors admit that they don't know everything. </P>
<P></P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P></P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
<P></P>
<P>Currently my DD is seeing the head of the pulmonary departmet at a chidren's hospital and I gained so much additional respect for him today because when I picked up a copy of the letter he wrote to my pediatrician it said "mucus clearing disorder of unknown etiology". To me this means this doctor took my feeback seriously and took off my DDs asthma dx and agrees she has a mucus clearing disorder, but admits he just doesn't know which one yet. </P>
<P></P>
<P>By the way I learn a lot more from the letters that specialists write to the referring doctor than I learn during an office visit. They all seem to write what we discussed, medicine changes, test results, etc., but they also write short term thoughts on what my happen next, and long term plans for what to do as things come up. </P>
I agree with Stacey, the doctors, patients and parents must work as a team. I've always had a fear of making suggestions to doctors and instead learned to play dumb and make them think it was their idea. This is completely ridiculous since I'm not there to massage their ego. This was due to bad experiences in the past trying to make a suggestion to a doctor only to have them act as if I have no idea what I am talking about (and the fact that I can be quite shy). DS' pulmo is absolutely the best doctor I have ever dealt with. Even though I had the same fear and eventually brought up the possibility of CF through email, I had a good feeling about this guy. His response shocked me, although it shouldn't have since I'd only had great experiences with him. "I too share your concerns regarding CF in Deven." As odd as it sounds, I felt like a huge weight was lifted off my shoulders, a doctor who listens and wants to work with me! At the next appt. he asked me to call him by his first name - no need for titles and said after all we are both working together towards the same goal, to find out what is going on with DS and do our best to get him better. He also thanked me for bringing up CF and said he thinks that's how a doctor/patient relationship should work. I realize that not all doctor's are like this, but he has opened me up to trying to talk to doctors as if they are people, not just doctors. If I have a feeling about something, I'll let them know. I'm sure they are all very aware of how much information is now available to us layman and that most of us can't resist using the internet, and support groups, as the wonderful tools they can be. I would think that if you mention that someone you know has experienced this or that, they will take you seriously without feeling as if we are trampling on their expertise.
Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
I agree with Stacey, the doctors, patients and parents must work as a team. I've always had a fear of making suggestions to doctors and instead learned to play dumb and make them think it was their idea. This is completely ridiculous since I'm not there to massage their ego. This was due to bad experiences in the past trying to make a suggestion to a doctor only to have them act as if I have no idea what I am talking about (and the fact that I can be quite shy). DS' pulmo is absolutely the best doctor I have ever dealt with. Even though I had the same fear and eventually brought up the possibility of CF through email, I had a good feeling about this guy. His response shocked me, although it shouldn't have since I'd only had great experiences with him. "I too share your concerns regarding CF in Deven." As odd as it sounds, I felt like a huge weight was lifted off my shoulders, a doctor who listens and wants to work with me! At the next appt. he asked me to call him by his first name - no need for titles and said after all we are both working together towards the same goal, to find out what is going on with DS and do our best to get him better. He also thanked me for bringing up CF and said he thinks that's how a doctor/patient relationship should work. I realize that not all doctor's are like this, but he has opened me up to trying to talk to doctors as if they are people, not just doctors. If I have a feeling about something, I'll let them know. I'm sure they are all very aware of how much information is now available to us layman and that most of us can't resist using the internet, and support groups, as the wonderful tools they can be. I would think that if you mention that someone you know has experienced this or that, they will take you seriously without feeling as if we are trampling on their expertise.
Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
I agree with Stacey, the doctors, patients and parents must work as a team. I've always had a fear of making suggestions to doctors and instead learned to play dumb and make them think it was their idea. This is completely ridiculous since I'm not there to massage their ego. This was due to bad experiences in the past trying to make a suggestion to a doctor only to have them act as if I have no idea what I am talking about (and the fact that I can be quite shy). DS' pulmo is absolutely the best doctor I have ever dealt with. Even though I had the same fear and eventually brought up the possibility of CF through email, I had a good feeling about this guy. His response shocked me, although it shouldn't have since I'd only had great experiences with him. "I too share your concerns regarding CF in Deven." As odd as it sounds, I felt like a huge weight was lifted off my shoulders, a doctor who listens and wants to work with me! At the next appt. he asked me to call him by his first name - no need for titles and said after all we are both working together towards the same goal, to find out what is going on with DS and do our best to get him better. He also thanked me for bringing up CF and said he thinks that's how a doctor/patient relationship should work. I realize that not all doctor's are like this, but he has opened me up to trying to talk to doctors as if they are people, not just doctors. If I have a feeling about something, I'll let them know. I'm sure they are all very aware of how much information is now available to us layman and that most of us can't resist using the internet, and support groups, as the wonderful tools they can be. I would think that if you mention that someone you know has experienced this or that, they will take you seriously without feeling as if we are trampling on their expertise.
<br />
<br />Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
<br />
<br />Good point Beccamom, I have also found the notes extremely helpful. I've ordered all of my son's medical history and found things out that I wasn't aware of that were going on 6 years ago.
I keep bringning up things i learned on this forum almost every visit. My doctor is not really used to this kind of thing, b/c here in France people look up to their doctors and never question anything (which is far from being my case). In spite of that, I don't think she was offended, I take great care to "suggest" things and bring articles to back it up. Also I don't usually say I found this on internet, I say something, parents of people w/cf that I met on internet have such and such experience with that.
I keep bringning up things i learned on this forum almost every visit. My doctor is not really used to this kind of thing, b/c here in France people look up to their doctors and never question anything (which is far from being my case). In spite of that, I don't think she was offended, I take great care to "suggest" things and bring articles to back it up. Also I don't usually say I found this on internet, I say something, parents of people w/cf that I met on internet have such and such experience with that.
I keep bringning up things i learned on this forum almost every visit. My doctor is not really used to this kind of thing, b/c here in France people look up to their doctors and never question anything (which is far from being my case). In spite of that, I don't think she was offended, I take great care to "suggest" things and bring articles to back it up. Also I don't usually say I found this on internet, I say something, parents of people w/cf that I met on internet have such and such experience with that.
i always talk to aidan's doctor and nurse about what ive learned on here. i like knowing on some level what they are talking about especially when it comes to surgery's when it comes up from what i have learned on here. there are so many levels of cf here and age groups i feel like i have a glimps of things to come. wheather they do or not, at the very least i have heard of it on here. i have aidans nutritionist actually on here a few times. and she was blown away about how much information is here. and there are a few things she learned herself she didnt knw. it was minor, that probably didnt sound good.lol. she didnt know about the prunning of hands fingers and feet from cf. anyway i enjoy discussing what i learn off of here with his team. were all very close his doctor always hugs me asks me how im doing. and she loves aidan. hugs him. gives him books. snacks. i feel lucky to have them.
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Elizabeth
mama to Aidan 5 w/cf
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Elizabeth
mama to Aidan 5 w/cf
i always talk to aidan's doctor and nurse about what ive learned on here. i like knowing on some level what they are talking about especially when it comes to surgery's when it comes up from what i have learned on here. there are so many levels of cf here and age groups i feel like i have a glimps of things to come. wheather they do or not, at the very least i have heard of it on here. i have aidans nutritionist actually on here a few times. and she was blown away about how much information is here. and there are a few things she learned herself she didnt knw. it was minor, that probably didnt sound good.lol. she didnt know about the prunning of hands fingers and feet from cf. anyway i enjoy discussing what i learn off of here with his team. were all very close his doctor always hugs me asks me how im doing. and she loves aidan. hugs him. gives him books. snacks. i feel lucky to have them.
------------------------------------------------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
------------------------------------------------------------------------------------------
Elizabeth
mama to Aidan 5 w/cf
i always talk to aidan's doctor and nurse about what ive learned on here. i like knowing on some level what they are talking about especially when it comes to surgery's when it comes up from what i have learned on here. there are so many levels of cf here and age groups i feel like i have a glimps of things to come. wheather they do or not, at the very least i have heard of it on here. i have aidans nutritionist actually on here a few times. and she was blown away about how much information is here. and there are a few things she learned herself she didnt knw. it was minor, that probably didnt sound good.lol. she didnt know about the prunning of hands fingers and feet from cf. anyway i enjoy discussing what i learn off of here with his team. were all very close his doctor always hugs me asks me how im doing. and she loves aidan. hugs him. gives him books. snacks. i feel lucky to have them.
<br />------------------------------------------------------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/cf
<br />------------------------------------------------------------------------------------------
<br />Elizabeth
<br />mama to Aidan 5 w/cf