Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 WOW! What a great letter! Did you ever get a reply?? docs.... > With all the talk about difficulties with doctors and such, I thought I'd > share with you a letter I wrote right after my son was finally diagnosed > (after 4 years of accumulating neurological symptoms). Four years have > passed since he was diagnosed and I still keep that letter around and > re-read it every once in a while. For some reason it makes me feel better > when I'm doubting my instincts I don't know if it made a difference, but > I like to think it did. And if nothing else, it sure helped me get rid of a > lot of anger! > > Here is the letter I wrote to my son's pediatrician.... > > > =================================================================== > Dear Dr. XXXXXXXXX, > > I don't know if you will remember me or not, but my name is Terri Mason and > I have a son named Carl who will turn 6 years old this October. You were > Carl's pediatrician from March, 1995 through approximately June, 1997 and I > have some information I would like to share with you regarding Carl. > > You were a very personable doctor and had a great " bed-side " manner. You > were always cheerful and you were great with Carl. I liked you instantly. > > Carl was a pretty normal kid - or so I thought, until right before you > started seeing him. He had very frequent ear infections and the normal > coughs and sniffles, but until he was 18 months old nobody suspected > anything else. In retrospect there were some early indicators that > something might be amiss - the tachypnea, low blood sugar and hypertonicity > at birth as well as formula intolerance, high unexplained fevers and trouble > breast feeding, but nothing that would have been a big red flag. > > At about the age of 18 months he developed nystagmus which was followed > about 9 months later by progressively worsening optic nerve atrophy. At > first the ophthalmologist suspected a brain tumor, but that was quickly > ruled out and it was suggested that he be followed by neurology to make sure > there was nothing else wrong. As I started to look for the cause of the > optic nerve atrophy, I found the search to be somewhat discouraging. It > seemed that optic nerve atrophy was either something you were born with or > something that was part of a much bigger picture - usually metabolic in > nature - and those metabolic diseases were nasty, he certainly didn't have > one of those! > > I'm one of those moms that likes to attribute everything out of the ordinary > to age or clumsiness. I'm kind of the opposite of " parentnoid " and my > friends often call me the " Queen of Denial " And of course, because nobody > really knew exactly what the nystagmus and optic nerve atrophy were doing to > Carl's vision, I was the first one to attribute everything to his visual > impairment. In other words, if I am concerned enough to bring something up > to a doctor - even casually, then there is probably reason to be concerned. > > I came upon a disease called LHON - Leber's Hereditary Optic Neuropathy. > This was a mitochondrial disease that resulted in optic nerve atrophy > primarily in young men. Although it would have been out of the ordinary for > someone as young as Carl to manifest the signs of this disease, I thought it > was worth looking into. One of the things I really liked about the > possibility of LHON is that it seemed relatively benign. Other than the > visual impairment that resulted - which was usually quite significant, that > was usually the only symptom of the disease. When I brought this to the > attention of Carl's neurologist she checked into where we might be able to > get the testing done and gave me the information. I then contacted you with > that information. I don't suppose you remember what your response was, but > you chuckled and said, " Optic nerve atrophy of unknown origin - it happens > all the time! We'll probably never find the cause. " You wouldn't order the > tests, but they have since been done and were negative. > > I brought up other things like his clumsiness and the fact that he seemed to > be walking funny, but you dismissed it as the rantings of an overly > concerned parent and I was more than happy to accept that. > > I gave up looking. I figured we could deal with the vision problem and you > were completely unconcerned, so why should I continue to look for something? > So Carl had these wiggly eyes? So he got unexplained high fevers when he > wasn't sick? So he was a little clumsy? So his growth seemed to be going > from the 90th % to the 15th % - he was just slowing down a little, right? > Wrong. > > Carl was getting more clumsy as he grew older - not less. A neuropsych > evaluation was done which showed his motor skills were profoundly delayed > and his cognitive skills were deteriorating as well. You were still > unconcerned, but the results were like a slap in the face with reality to > me. There was something wrong and I had to find out what it was. > > I obtained copies of all of Carl's medical records and was literally > floored. The neurological reports seemed to be documenting some little boy > with a progressive neurodegenerative disorder - this couldn't be my son, he > just had a visual impairment!?!? In an August ,1995 letter to you, Carl's > neurologist had written, " I am concerned that his nystagmus may be an early > manifestation of a genetic/metabolic/possibly degenerative disorder > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored that? No > lab tests? No metabolic work up? You just continued to let me think that > there was nothing wrong and that I was being paranoid? > > My first reaction? Disbelief, quickly followed by devastation as the > reality sunk in. And then? Anger. Anger specifically directed towards you > for making me feel like an idiot. Making me feel like I was being > overprotective and concerned about nothing. And then anger at myself for > wasting an entire year that I could have spent researching and looking for > the cause. I immediately started researching again and unfortunately > encountered much the same ignorance and attitude with your successor, but at > least he was willing to listen to the neurologist and geneticist. > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy looking for > evidence of a mitochondrial disease. The evidence was found. In addition, > the MRI showed spongiform deterioration in the brainstem/midbrain area > consistent with Leigh's disease - a particularly devastating mitochondrial > encephalomyopathy. > > I have been writing this letter to you for a year and a half, waiting for > the day when I could tell you the actual diagnosis. A year and a half - > that's how long it has taken from the time I found out " something " was > really wrong, researched enough to have a pretty good idea of what it was > and then convinced the doctors and insurance company to pursue the testing. > > Mitochondrial diseases are very difficult to diagnosis. But I didn't expect > you to make the diagnosis, I just expected you to make an effort. To be a > facilitator, to help the process, not be a roadblock that I had to overcome. > > My intention is not to place blame or make you feel bad, my intention is to > teach. If next time you read the notes a little more carefully, take the > concerns of another doctor a little more seriously or just think twice > before dismissing a first time mom as " parentnoid " , then that's all I could > ask for. > > Respectfully and Sincerely, > > Terri Mason > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic nerve > atrophy, incoordination, developmental delay, hyperreflexia, ankle clonus, > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor apraxia, > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nope, I never did get a reply. I think he probably would have been concerned about the possibility of lawsuits or bad press - but that was certainly not my intention. I think more than anything I just had to get it off my chest at the time He was the kind of doctor though that I think would really have taken it to heart so hopefully if he ever saw a patient like Carl again, that letter was in the back of his mind somewhere. Terri > >Reply-To: Mito >To: <Mito > >Subject: Re: docs.... >Date: Fri, 19 Apr 2002 09:40:02 -0400 > >WOW! What a great letter! Did you ever get a reply?? > > > docs.... > > > > With all the talk about difficulties with doctors and such, I thought >I'd > > share with you a letter I wrote right after my son was finally diagnosed > > (after 4 years of accumulating neurological symptoms). Four years have > > passed since he was diagnosed and I still keep that letter around and > > re-read it every once in a while. For some reason it makes me feel >better > > when I'm doubting my instincts I don't know if it made a difference, >but > > I like to think it did. And if nothing else, it sure helped me get rid >of >a > > lot of anger! > > > > Here is the letter I wrote to my son's pediatrician.... > > > > > > =================================================================== > > Dear Dr. XXXXXXXXX, > > > > I don't know if you will remember me or not, but my name is Terri Mason >and > > I have a son named Carl who will turn 6 years old this October. You >were > > Carl's pediatrician from March, 1995 through approximately June, 1997 >and >I > > have some information I would like to share with you regarding Carl. > > > > You were a very personable doctor and had a great " bed-side " manner. >You > > were always cheerful and you were great with Carl. I liked you >instantly. > > > > Carl was a pretty normal kid - or so I thought, until right before you > > started seeing him. He had very frequent ear infections and the normal > > coughs and sniffles, but until he was 18 months old nobody suspected > > anything else. In retrospect there were some early indicators that > > something might be amiss - the tachypnea, low blood sugar and >hypertonicity > > at birth as well as formula intolerance, high unexplained fevers and >trouble > > breast feeding, but nothing that would have been a big red flag. > > > > At about the age of 18 months he developed nystagmus which was followed > > about 9 months later by progressively worsening optic nerve atrophy. At > > first the ophthalmologist suspected a brain tumor, but that was quickly > > ruled out and it was suggested that he be followed by neurology to make >sure > > there was nothing else wrong. As I started to look for the cause of the > > optic nerve atrophy, I found the search to be somewhat discouraging. It > > seemed that optic nerve atrophy was either something you were born with >or > > something that was part of a much bigger picture - usually metabolic in > > nature - and those metabolic diseases were nasty, he certainly didn't >have > > one of those! > > > > I'm one of those moms that likes to attribute everything out of the >ordinary > > to age or clumsiness. I'm kind of the opposite of " parentnoid " and my > > friends often call me the " Queen of Denial " And of course, because >nobody > > really knew exactly what the nystagmus and optic nerve atrophy were >doing >to > > Carl's vision, I was the first one to attribute everything to his visual > > impairment. In other words, if I am concerned enough to bring something >up > > to a doctor - even casually, then there is probably reason to be >concerned. > > > > I came upon a disease called LHON - Leber's Hereditary Optic Neuropathy. > > This was a mitochondrial disease that resulted in optic nerve atrophy > > primarily in young men. Although it would have been out of the ordinary >for > > someone as young as Carl to manifest the signs of this disease, I >thought >it > > was worth looking into. One of the things I really liked about the > > possibility of LHON is that it seemed relatively benign. Other than the > > visual impairment that resulted - which was usually quite significant, >that > > was usually the only symptom of the disease. When I brought this to the > > attention of Carl's neurologist she checked into where we might be able >to > > get the testing done and gave me the information. I then contacted you >with > > that information. I don't suppose you remember what your response was, >but > > you chuckled and said, " Optic nerve atrophy of unknown origin - it >happens > > all the time! We'll probably never find the cause. " You wouldn't order >the > > tests, but they have since been done and were negative. > > > > I brought up other things like his clumsiness and the fact that he >seemed >to > > be walking funny, but you dismissed it as the rantings of an overly > > concerned parent and I was more than happy to accept that. > > > > I gave up looking. I figured we could deal with the vision problem and >you > > were completely unconcerned, so why should I continue to look for >something? > > So Carl had these wiggly eyes? So he got unexplained high fevers when >he > > wasn't sick? So he was a little clumsy? So his growth seemed to be >going > > from the 90th % to the 15th % - he was just slowing down a little, >right? > > Wrong. > > > > Carl was getting more clumsy as he grew older - not less. A neuropsych > > evaluation was done which showed his motor skills were profoundly >delayed > > and his cognitive skills were deteriorating as well. You were still > > unconcerned, but the results were like a slap in the face with reality >to > > me. There was something wrong and I had to find out what it was. > > > > I obtained copies of all of Carl's medical records and was literally > > floored. The neurological reports seemed to be documenting some little >boy > > with a progressive neurodegenerative disorder - this couldn't be my son, >he > > just had a visual impairment!?!? In an August ,1995 letter to you, >Carl's > > neurologist had written, " I am concerned that his nystagmus may be an >early > > manifestation of a genetic/metabolic/possibly degenerative disorder > > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored that? >No > > lab tests? No metabolic work up? You just continued to let me think >that > > there was nothing wrong and that I was being paranoid? > > > > My first reaction? Disbelief, quickly followed by devastation as the > > reality sunk in. And then? Anger. Anger specifically directed towards >you > > for making me feel like an idiot. Making me feel like I was being > > overprotective and concerned about nothing. And then anger at myself >for > > wasting an entire year that I could have spent researching and looking >for > > the cause. I immediately started researching again and unfortunately > > encountered much the same ignorance and attitude with your successor, >but >at > > least he was willing to listen to the neurologist and geneticist. > > > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy looking >for > > evidence of a mitochondrial disease. The evidence was found. In >addition, > > the MRI showed spongiform deterioration in the brainstem/midbrain area > > consistent with Leigh's disease - a particularly devastating >mitochondrial > > encephalomyopathy. > > > > I have been writing this letter to you for a year and a half, waiting >for > > the day when I could tell you the actual diagnosis. A year and a half - > > that's how long it has taken from the time I found out " something " was > > really wrong, researched enough to have a pretty good idea of what it >was > > and then convinced the doctors and insurance company to pursue the >testing. > > > > Mitochondrial diseases are very difficult to diagnosis. But I didn't >expect > > you to make the diagnosis, I just expected you to make an effort. To be >a > > facilitator, to help the process, not be a roadblock that I had to >overcome. > > > > My intention is not to place blame or make you feel bad, my intention is >to > > teach. If next time you read the notes a little more carefully, take >the > > concerns of another doctor a little more seriously or just think twice > > before dismissing a first time mom as " parentnoid " , then that's all I >could > > ask for. > > > > Respectfully and Sincerely, > > > > Terri Mason > > > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic >nerve > > atrophy, incoordination, developmental delay, hyperreflexia, ankle >clonus, > > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor >apraxia, > > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp. > > > > > > > > > > Please contact mito-owner with any problems or >questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nope, I never did get a reply. I think he probably would have been concerned about the possibility of lawsuits or bad press - but that was certainly not my intention. I think more than anything I just had to get it off my chest at the time He was the kind of doctor though that I think would really have taken it to heart so hopefully if he ever saw a patient like Carl again, that letter was in the back of his mind somewhere. Terri > >Reply-To: Mito >To: <Mito > >Subject: Re: docs.... >Date: Fri, 19 Apr 2002 09:40:02 -0400 > >WOW! What a great letter! Did you ever get a reply?? > > > docs.... > > > > With all the talk about difficulties with doctors and such, I thought >I'd > > share with you a letter I wrote right after my son was finally diagnosed > > (after 4 years of accumulating neurological symptoms). Four years have > > passed since he was diagnosed and I still keep that letter around and > > re-read it every once in a while. For some reason it makes me feel >better > > when I'm doubting my instincts I don't know if it made a difference, >but > > I like to think it did. And if nothing else, it sure helped me get rid >of >a > > lot of anger! > > > > Here is the letter I wrote to my son's pediatrician.... > > > > > > =================================================================== > > Dear Dr. XXXXXXXXX, > > > > I don't know if you will remember me or not, but my name is Terri Mason >and > > I have a son named Carl who will turn 6 years old this October. You >were > > Carl's pediatrician from March, 1995 through approximately June, 1997 >and >I > > have some information I would like to share with you regarding Carl. > > > > You were a very personable doctor and had a great " bed-side " manner. >You > > were always cheerful and you were great with Carl. I liked you >instantly. > > > > Carl was a pretty normal kid - or so I thought, until right before you > > started seeing him. He had very frequent ear infections and the normal > > coughs and sniffles, but until he was 18 months old nobody suspected > > anything else. In retrospect there were some early indicators that > > something might be amiss - the tachypnea, low blood sugar and >hypertonicity > > at birth as well as formula intolerance, high unexplained fevers and >trouble > > breast feeding, but nothing that would have been a big red flag. > > > > At about the age of 18 months he developed nystagmus which was followed > > about 9 months later by progressively worsening optic nerve atrophy. At > > first the ophthalmologist suspected a brain tumor, but that was quickly > > ruled out and it was suggested that he be followed by neurology to make >sure > > there was nothing else wrong. As I started to look for the cause of the > > optic nerve atrophy, I found the search to be somewhat discouraging. It > > seemed that optic nerve atrophy was either something you were born with >or > > something that was part of a much bigger picture - usually metabolic in > > nature - and those metabolic diseases were nasty, he certainly didn't >have > > one of those! > > > > I'm one of those moms that likes to attribute everything out of the >ordinary > > to age or clumsiness. I'm kind of the opposite of " parentnoid " and my > > friends often call me the " Queen of Denial " And of course, because >nobody > > really knew exactly what the nystagmus and optic nerve atrophy were >doing >to > > Carl's vision, I was the first one to attribute everything to his visual > > impairment. In other words, if I am concerned enough to bring something >up > > to a doctor - even casually, then there is probably reason to be >concerned. > > > > I came upon a disease called LHON - Leber's Hereditary Optic Neuropathy. > > This was a mitochondrial disease that resulted in optic nerve atrophy > > primarily in young men. Although it would have been out of the ordinary >for > > someone as young as Carl to manifest the signs of this disease, I >thought >it > > was worth looking into. One of the things I really liked about the > > possibility of LHON is that it seemed relatively benign. Other than the > > visual impairment that resulted - which was usually quite significant, >that > > was usually the only symptom of the disease. When I brought this to the > > attention of Carl's neurologist she checked into where we might be able >to > > get the testing done and gave me the information. I then contacted you >with > > that information. I don't suppose you remember what your response was, >but > > you chuckled and said, " Optic nerve atrophy of unknown origin - it >happens > > all the time! We'll probably never find the cause. " You wouldn't order >the > > tests, but they have since been done and were negative. > > > > I brought up other things like his clumsiness and the fact that he >seemed >to > > be walking funny, but you dismissed it as the rantings of an overly > > concerned parent and I was more than happy to accept that. > > > > I gave up looking. I figured we could deal with the vision problem and >you > > were completely unconcerned, so why should I continue to look for >something? > > So Carl had these wiggly eyes? So he got unexplained high fevers when >he > > wasn't sick? So he was a little clumsy? So his growth seemed to be >going > > from the 90th % to the 15th % - he was just slowing down a little, >right? > > Wrong. > > > > Carl was getting more clumsy as he grew older - not less. A neuropsych > > evaluation was done which showed his motor skills were profoundly >delayed > > and his cognitive skills were deteriorating as well. You were still > > unconcerned, but the results were like a slap in the face with reality >to > > me. There was something wrong and I had to find out what it was. > > > > I obtained copies of all of Carl's medical records and was literally > > floored. The neurological reports seemed to be documenting some little >boy > > with a progressive neurodegenerative disorder - this couldn't be my son, >he > > just had a visual impairment!?!? In an August ,1995 letter to you, >Carl's > > neurologist had written, " I am concerned that his nystagmus may be an >early > > manifestation of a genetic/metabolic/possibly degenerative disorder > > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored that? >No > > lab tests? No metabolic work up? You just continued to let me think >that > > there was nothing wrong and that I was being paranoid? > > > > My first reaction? Disbelief, quickly followed by devastation as the > > reality sunk in. And then? Anger. Anger specifically directed towards >you > > for making me feel like an idiot. Making me feel like I was being > > overprotective and concerned about nothing. And then anger at myself >for > > wasting an entire year that I could have spent researching and looking >for > > the cause. I immediately started researching again and unfortunately > > encountered much the same ignorance and attitude with your successor, >but >at > > least he was willing to listen to the neurologist and geneticist. > > > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy looking >for > > evidence of a mitochondrial disease. The evidence was found. In >addition, > > the MRI showed spongiform deterioration in the brainstem/midbrain area > > consistent with Leigh's disease - a particularly devastating >mitochondrial > > encephalomyopathy. > > > > I have been writing this letter to you for a year and a half, waiting >for > > the day when I could tell you the actual diagnosis. A year and a half - > > that's how long it has taken from the time I found out " something " was > > really wrong, researched enough to have a pretty good idea of what it >was > > and then convinced the doctors and insurance company to pursue the >testing. > > > > Mitochondrial diseases are very difficult to diagnosis. But I didn't >expect > > you to make the diagnosis, I just expected you to make an effort. To be >a > > facilitator, to help the process, not be a roadblock that I had to >overcome. > > > > My intention is not to place blame or make you feel bad, my intention is >to > > teach. If next time you read the notes a little more carefully, take >the > > concerns of another doctor a little more seriously or just think twice > > before dismissing a first time mom as " parentnoid " , then that's all I >could > > ask for. > > > > Respectfully and Sincerely, > > > > Terri Mason > > > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic >nerve > > atrophy, incoordination, developmental delay, hyperreflexia, ankle >clonus, > > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor >apraxia, > > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp. > > > > > > > > > > Please contact mito-owner with any problems or >questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 What an awesome letter- thanks for sharing!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 Terri and others: It seems we also need to remind ourselves to " thank " doctors that are understanding of our situations. Just as we remind ourselves that if we critize our children a lot they won't hear the positives we and others may give them from time to time. I am now thinking of writing to our ped just to tell him thank you for picking up on Leah's symtpoms after her first episode and calling a neurologist in Madison about her blood workup and that was on a Saturday. There will always be doctors who have big egos because of the profession they are in (and actors and others probably who think they are above us) but it is up to us to gently put them in their place and " educate " them on this and other diseases and how to " treat " people. It was a wonderful letter and you told it in a dignified way and pointed out the facts. Which many people do not do. I learned a long time ago that you try not to use the word you as it puts the defensive shield up in people. But try to use this is how I feel or believe and what I see is happening. But way to go Terri, I admire you that you did not only write the letter but mailed it. I hope that the doctor thought long and hard about your letter and what it means to be a doctor and to listen to the advice of other doctors who have seen the same child and discuss it about what they feel is correct and why. I know I always get Leahs medical reports after a doctors visit to see what was written and just to have it in her records so if some one needs something I don't have to jump through hoops to get the report. N. mom to Leah Terri Mason wrote: > Nope, I never did get a reply. I think he probably would have been > concerned about the possibility of lawsuits or bad press - but that was > certainly not my intention. I think more than anything I just had to get it > off my chest at the time He was the kind of doctor though that I think > would really have taken it to heart so hopefully if he ever saw a patient > like Carl again, that letter was in the back of his mind somewhere. > > Terri > > > > >Reply-To: Mito > >To: <Mito > > >Subject: Re: docs.... > >Date: Fri, 19 Apr 2002 09:40:02 -0400 > > > >WOW! What a great letter! Did you ever get a reply?? > > > > > > docs.... > > > > > > > With all the talk about difficulties with doctors and such, I thought > >I'd > > > share with you a letter I wrote right after my son was finally diagnosed > > > (after 4 years of accumulating neurological symptoms). Four years have > > > passed since he was diagnosed and I still keep that letter around and > > > re-read it every once in a while. For some reason it makes me feel > >better > > > when I'm doubting my instincts I don't know if it made a difference, > >but > > > I like to think it did. And if nothing else, it sure helped me get rid > >of > >a > > > lot of anger! > > > > > > Here is the letter I wrote to my son's pediatrician.... > > > > > > > > > =================================================================== > > > Dear Dr. XXXXXXXXX, > > > > > > I don't know if you will remember me or not, but my name is Terri Mason > >and > > > I have a son named Carl who will turn 6 years old this October. You > >were > > > Carl's pediatrician from March, 1995 through approximately June, 1997 > >and > >I > > > have some information I would like to share with you regarding Carl. > > > > > > You were a very personable doctor and had a great " bed-side " manner. > >You > > > were always cheerful and you were great with Carl. I liked you > >instantly. > > > > > > Carl was a pretty normal kid - or so I thought, until right before you > > > started seeing him. He had very frequent ear infections and the normal > > > coughs and sniffles, but until he was 18 months old nobody suspected > > > anything else. In retrospect there were some early indicators that > > > something might be amiss - the tachypnea, low blood sugar and > >hypertonicity > > > at birth as well as formula intolerance, high unexplained fevers and > >trouble > > > breast feeding, but nothing that would have been a big red flag. > > > > > > At about the age of 18 months he developed nystagmus which was followed > > > about 9 months later by progressively worsening optic nerve atrophy. At > > > first the ophthalmologist suspected a brain tumor, but that was quickly > > > ruled out and it was suggested that he be followed by neurology to make > >sure > > > there was nothing else wrong. As I started to look for the cause of the > > > optic nerve atrophy, I found the search to be somewhat discouraging. It > > > seemed that optic nerve atrophy was either something you were born with > >or > > > something that was part of a much bigger picture - usually metabolic in > > > nature - and those metabolic diseases were nasty, he certainly didn't > >have > > > one of those! > > > > > > I'm one of those moms that likes to attribute everything out of the > >ordinary > > > to age or clumsiness. I'm kind of the opposite of " parentnoid " and my > > > friends often call me the " Queen of Denial " And of course, because > >nobody > > > really knew exactly what the nystagmus and optic nerve atrophy were > >doing > >to > > > Carl's vision, I was the first one to attribute everything to his visual > > > impairment. In other words, if I am concerned enough to bring something > >up > > > to a doctor - even casually, then there is probably reason to be > >concerned. > > > > > > I came upon a disease called LHON - Leber's Hereditary Optic Neuropathy. > > > This was a mitochondrial disease that resulted in optic nerve atrophy > > > primarily in young men. Although it would have been out of the ordinary > >for > > > someone as young as Carl to manifest the signs of this disease, I > >thought > >it > > > was worth looking into. One of the things I really liked about the > > > possibility of LHON is that it seemed relatively benign. Other than the > > > visual impairment that resulted - which was usually quite significant, > >that > > > was usually the only symptom of the disease. When I brought this to the > > > attention of Carl's neurologist she checked into where we might be able > >to > > > get the testing done and gave me the information. I then contacted you > >with > > > that information. I don't suppose you remember what your response was, > >but > > > you chuckled and said, " Optic nerve atrophy of unknown origin - it > >happens > > > all the time! We'll probably never find the cause. " You wouldn't order > >the > > > tests, but they have since been done and were negative. > > > > > > I brought up other things like his clumsiness and the fact that he > >seemed > >to > > > be walking funny, but you dismissed it as the rantings of an overly > > > concerned parent and I was more than happy to accept that. > > > > > > I gave up looking. I figured we could deal with the vision problem and > >you > > > were completely unconcerned, so why should I continue to look for > >something? > > > So Carl had these wiggly eyes? So he got unexplained high fevers when > >he > > > wasn't sick? So he was a little clumsy? So his growth seemed to be > >going > > > from the 90th % to the 15th % - he was just slowing down a little, > >right? > > > Wrong. > > > > > > Carl was getting more clumsy as he grew older - not less. A neuropsych > > > evaluation was done which showed his motor skills were profoundly > >delayed > > > and his cognitive skills were deteriorating as well. You were still > > > unconcerned, but the results were like a slap in the face with reality > >to > > > me. There was something wrong and I had to find out what it was. > > > > > > I obtained copies of all of Carl's medical records and was literally > > > floored. The neurological reports seemed to be documenting some little > >boy > > > with a progressive neurodegenerative disorder - this couldn't be my son, > >he > > > just had a visual impairment!?!? In an August ,1995 letter to you, > >Carl's > > > neurologist had written, " I am concerned that his nystagmus may be an > >early > > > manifestation of a genetic/metabolic/possibly degenerative disorder > > > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored that? > >No > > > lab tests? No metabolic work up? You just continued to let me think > >that > > > there was nothing wrong and that I was being paranoid? > > > > > > My first reaction? Disbelief, quickly followed by devastation as the > > > reality sunk in. And then? Anger. Anger specifically directed towards > >you > > > for making me feel like an idiot. Making me feel like I was being > > > overprotective and concerned about nothing. And then anger at myself > >for > > > wasting an entire year that I could have spent researching and looking > >for > > > the cause. I immediately started researching again and unfortunately > > > encountered much the same ignorance and attitude with your successor, > >but > >at > > > least he was willing to listen to the neurologist and geneticist. > > > > > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy looking > >for > > > evidence of a mitochondrial disease. The evidence was found. In > >addition, > > > the MRI showed spongiform deterioration in the brainstem/midbrain area > > > consistent with Leigh's disease - a particularly devastating > >mitochondrial > > > encephalomyopathy. > > > > > > I have been writing this letter to you for a year and a half, waiting > >for > > > the day when I could tell you the actual diagnosis. A year and a half - > > > that's how long it has taken from the time I found out " something " was > > > really wrong, researched enough to have a pretty good idea of what it > >was > > > and then convinced the doctors and insurance company to pursue the > >testing. > > > > > > Mitochondrial diseases are very difficult to diagnosis. But I didn't > >expect > > > you to make the diagnosis, I just expected you to make an effort. To be > >a > > > facilitator, to help the process, not be a roadblock that I had to > >overcome. > > > > > > My intention is not to place blame or make you feel bad, my intention is > >to > > > teach. If next time you read the notes a little more carefully, take > >the > > > concerns of another doctor a little more seriously or just think twice > > > before dismissing a first time mom as " parentnoid " , then that's all I > >could > > > ask for. > > > > > > Respectfully and Sincerely, > > > > > > Terri Mason > > > > > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic > >nerve > > > atrophy, incoordination, developmental delay, hyperreflexia, ankle > >clonus, > > > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor > >apraxia, > > > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at > >http://explorer.msn.com/intl.asp. > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > >questions. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 , That is a very good point! I just finished writing a letter to the anesthesiologist who did Carl's port surgery last month. It was the first time that I didn't have to say a thing about the risks - he was the one who came in and told me about all of the extra precautions he was taking because of the underlying mitochondrial disease. I was thrilled and so relieved to not have to be the doctor for once - and to not have any *extra* worry. I have also sent Carl's pediatrician flowers in the past, as well as emails thanking her (and other docs) at appropriate times. I very strongly believe that the positive reinforcement of the good stuff is as important, if not moreso, than educating the boneheads Terri > >Reply-To: Mito >To: Mito >Subject: Re: docs.... >Date: Sat, 20 Apr 2002 15:16:42 -0500 > >Terri and others: > >It seems we also need to remind ourselves to " thank " doctors that are >understanding of our situations. Just as we remind ourselves that if we >critize >our children a lot they won't hear the positives we and others may give >them >from time to time. I am now thinking of writing to our ped just to tell >him >thank you for picking up on Leah's symtpoms after her first episode and >calling >a neurologist in Madison about her blood workup and that was on a Saturday. > >There will always be doctors who have big egos because of the profession >they >are in (and actors and others probably who think they are above us) but it >is up >to us to gently put them in their place and " educate " them on this and >other >diseases and how to " treat " people. It was a wonderful letter and you told >it >in a dignified way and pointed out the facts. Which many people do not do. > I >learned a long time ago that you try not to use the word you as it puts the >defensive shield up in people. But try to use this is how I feel or >believe and >what I see is happening. But way to go Terri, I admire you that you did >not >only write the letter but mailed it. I hope that the doctor thought long >and >hard about your letter and what it means to be a doctor and to listen to >the >advice of other doctors who have seen the same child and discuss it about >what >they feel is correct and why. I know I always get Leahs medical reports >after a >doctors visit to see what was written and just to have it in her records so >if >some one needs something I don't have to jump through hoops to get the >report. > > N. mom to Leah > >Terri Mason wrote: > > > Nope, I never did get a reply. I think he probably would have been > > concerned about the possibility of lawsuits or bad press - but that was > > certainly not my intention. I think more than anything I just had to >get it > > off my chest at the time He was the kind of doctor though that I >think > > would really have taken it to heart so hopefully if he ever saw a >patient > > like Carl again, that letter was in the back of his mind somewhere. > > > > Terri > > > > > > > >Reply-To: Mito > > >To: <Mito > > > >Subject: Re: docs.... > > >Date: Fri, 19 Apr 2002 09:40:02 -0400 > > > > > >WOW! What a great letter! Did you ever get a reply?? > > > > > > > > > docs.... > > > > > > > > > > With all the talk about difficulties with doctors and such, I >thought > > >I'd > > > > share with you a letter I wrote right after my son was finally >diagnosed > > > > (after 4 years of accumulating neurological symptoms). Four years >have > > > > passed since he was diagnosed and I still keep that letter around >and > > > > re-read it every once in a while. For some reason it makes me feel > > >better > > > > when I'm doubting my instincts I don't know if it made a >difference, > > >but > > > > I like to think it did. And if nothing else, it sure helped me get >rid > > >of > > >a > > > > lot of anger! > > > > > > > > Here is the letter I wrote to my son's pediatrician.... > > > > > > > > > > > > =================================================================== > > > > Dear Dr. XXXXXXXXX, > > > > > > > > I don't know if you will remember me or not, but my name is Terri >Mason > > >and > > > > I have a son named Carl who will turn 6 years old this October. You > > >were > > > > Carl's pediatrician from March, 1995 through approximately June, >1997 > > >and > > >I > > > > have some information I would like to share with you regarding Carl. > > > > > > > > You were a very personable doctor and had a great " bed-side " manner. > > >You > > > > were always cheerful and you were great with Carl. I liked you > > >instantly. > > > > > > > > Carl was a pretty normal kid - or so I thought, until right before >you > > > > started seeing him. He had very frequent ear infections and the >normal > > > > coughs and sniffles, but until he was 18 months old nobody suspected > > > > anything else. In retrospect there were some early indicators that > > > > something might be amiss - the tachypnea, low blood sugar and > > >hypertonicity > > > > at birth as well as formula intolerance, high unexplained fevers and > > >trouble > > > > breast feeding, but nothing that would have been a big red flag. > > > > > > > > At about the age of 18 months he developed nystagmus which was >followed > > > > about 9 months later by progressively worsening optic nerve atrophy. > At > > > > first the ophthalmologist suspected a brain tumor, but that was >quickly > > > > ruled out and it was suggested that he be followed by neurology to >make > > >sure > > > > there was nothing else wrong. As I started to look for the cause of >the > > > > optic nerve atrophy, I found the search to be somewhat discouraging. > It > > > > seemed that optic nerve atrophy was either something you were born >with > > >or > > > > something that was part of a much bigger picture - usually metabolic >in > > > > nature - and those metabolic diseases were nasty, he certainly >didn't > > >have > > > > one of those! > > > > > > > > I'm one of those moms that likes to attribute everything out of the > > >ordinary > > > > to age or clumsiness. I'm kind of the opposite of " parentnoid " and >my > > > > friends often call me the " Queen of Denial " And of course, because > > >nobody > > > > really knew exactly what the nystagmus and optic nerve atrophy were > > >doing > > >to > > > > Carl's vision, I was the first one to attribute everything to his >visual > > > > impairment. In other words, if I am concerned enough to bring >something > > >up > > > > to a doctor - even casually, then there is probably reason to be > > >concerned. > > > > > > > > I came upon a disease called LHON - Leber's Hereditary Optic >Neuropathy. > > > > This was a mitochondrial disease that resulted in optic nerve >atrophy > > > > primarily in young men. Although it would have been out of the >ordinary > > >for > > > > someone as young as Carl to manifest the signs of this disease, I > > >thought > > >it > > > > was worth looking into. One of the things I really liked about the > > > > possibility of LHON is that it seemed relatively benign. Other than >the > > > > visual impairment that resulted - which was usually quite >significant, > > >that > > > > was usually the only symptom of the disease. When I brought this to >the > > > > attention of Carl's neurologist she checked into where we might be >able > > >to > > > > get the testing done and gave me the information. I then contacted >you > > >with > > > > that information. I don't suppose you remember what your response >was, > > >but > > > > you chuckled and said, " Optic nerve atrophy of unknown origin - it > > >happens > > > > all the time! We'll probably never find the cause. " You wouldn't >order > > >the > > > > tests, but they have since been done and were negative. > > > > > > > > I brought up other things like his clumsiness and the fact that he > > >seemed > > >to > > > > be walking funny, but you dismissed it as the rantings of an overly > > > > concerned parent and I was more than happy to accept that. > > > > > > > > I gave up looking. I figured we could deal with the vision problem >and > > >you > > > > were completely unconcerned, so why should I continue to look for > > >something? > > > > So Carl had these wiggly eyes? So he got unexplained high fevers >when > > >he > > > > wasn't sick? So he was a little clumsy? So his growth seemed to be > > >going > > > > from the 90th % to the 15th % - he was just slowing down a little, > > >right? > > > > Wrong. > > > > > > > > Carl was getting more clumsy as he grew older - not less. A >neuropsych > > > > evaluation was done which showed his motor skills were profoundly > > >delayed > > > > and his cognitive skills were deteriorating as well. You were still > > > > unconcerned, but the results were like a slap in the face with >reality > > >to > > > > me. There was something wrong and I had to find out what it was. > > > > > > > > I obtained copies of all of Carl's medical records and was literally > > > > floored. The neurological reports seemed to be documenting some >little > > >boy > > > > with a progressive neurodegenerative disorder - this couldn't be my >son, > > >he > > > > just had a visual impairment!?!? In an August ,1995 letter to you, > > >Carl's > > > > neurologist had written, " I am concerned that his nystagmus may be >an > > >early > > > > manifestation of a genetic/metabolic/possibly degenerative disorder > > > > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored >that? > > >No > > > > lab tests? No metabolic work up? You just continued to let me >think > > >that > > > > there was nothing wrong and that I was being paranoid? > > > > > > > > My first reaction? Disbelief, quickly followed by devastation as >the > > > > reality sunk in. And then? Anger. Anger specifically directed >towards > > >you > > > > for making me feel like an idiot. Making me feel like I was being > > > > overprotective and concerned about nothing. And then anger at >myself > > >for > > > > wasting an entire year that I could have spent researching and >looking > > >for > > > > the cause. I immediately started researching again and >unfortunately > > > > encountered much the same ignorance and attitude with your >successor, > > >but > > >at > > > > least he was willing to listen to the neurologist and geneticist. > > > > > > > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy >looking > > >for > > > > evidence of a mitochondrial disease. The evidence was found. In > > >addition, > > > > the MRI showed spongiform deterioration in the brainstem/midbrain >area > > > > consistent with Leigh's disease - a particularly devastating > > >mitochondrial > > > > encephalomyopathy. > > > > > > > > I have been writing this letter to you for a year and a half, >waiting > > >for > > > > the day when I could tell you the actual diagnosis. A year and a >half - > > > > that's how long it has taken from the time I found out " something " >was > > > > really wrong, researched enough to have a pretty good idea of what >it > > >was > > > > and then convinced the doctors and insurance company to pursue the > > >testing. > > > > > > > > Mitochondrial diseases are very difficult to diagnosis. But I >didn't > > >expect > > > > you to make the diagnosis, I just expected you to make an effort. To >be > > >a > > > > facilitator, to help the process, not be a roadblock that I had to > > >overcome. > > > > > > > > My intention is not to place blame or make you feel bad, my >intention is > > >to > > > > teach. If next time you read the notes a little more carefully, >take > > >the > > > > concerns of another doctor a little more seriously or just think >twice > > > > before dismissing a first time mom as " parentnoid " , then that's all >I > > >could > > > > ask for. > > > > > > > > Respectfully and Sincerely, > > > > > > > > Terri Mason > > > > > > > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic > > >nerve > > > > atrophy, incoordination, developmental delay, hyperreflexia, ankle > > >clonus, > > > > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor > > >apraxia, > > > > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > > Get your FREE download of MSN Explorer at > > >http://explorer.msn.com/intl.asp. > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > >questions. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 I have only had one really bad doc - a GI when Clay was very little before we knew his diagnosis. He had sever stomach problems and this wonam had the gall to write in the chart that I was an over reactive crazy mother adnd that there was nothing seriously wrong with Clays stomach. Now note I was not a first time mother, Also take note that Clay had 8 hours of nursing care at nite at this time, because he was on an apnea monitior along with his twin and was having serious apnea spells. The nurse came with me and told this Dr. that Clay would not sleep, was up sceaming all nite in pain and would stain to pass a water bowel movement, screamed after eating, etc. Anyway, to make a long story short - I never went back to her (she was at CHOP and also a mother mind you and also well aware of the fact that I was a lawyer). So when caly was 16 months old had had a nissen, and gtube placed becuase he was all of 16 pounds and eating less than 10 ounces a day of formula and no food. Anyway after 6 hours of surgery where they had to reposition his whole stomach as it was completely pushed up and very very rasw from severe reflux, despite the fact that he had been on anti reflux med since he was 6 days old. So I obtained the surgical records, and his latest GI records, and sent them to her with a very nice note (HAHAHHA) telling her that next time before she decides to judge a parent and tell them that they are crazy - listen. especially since most parent knwo there kids better than docs. I told her apparently there was something wrong with this child and if I had kept seeing you you would have completely ignored this until it was too late. SHe never responded and my pediatrician - g-d bless his sole - he is a wonderful saint - has stopped referring patients to her and agreed with me sending her a letter. I was not nice or rude and did not threaten to sue her just sent her a very professionally worded letter telling her to listen next time. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Here, here. I too have sent flowers to docs and their secretaries as well as chocolates. I have dealt with some incredible doctors during our search for what is going on with Owen. I also have been dismissed (not by many) but by two. When we have a confirmed diagnosis, I am sending a letter to them similar to Terri's. Thank you for sharing the letter, Terri. It is important to educate those that need it and remind those that do take the time to learn and care that we appreciate it. Sincerely, Bridget Mom to Owen, 3 yrs, highly suspected Mito, autism , 1 yr, developing well docs.... > > > > > > > > > > With all the talk about difficulties with doctors and such, I >thought > > >I'd > > > > share with you a letter I wrote right after my son was finally >diagnosed > > > > (after 4 years of accumulating neurological symptoms). Four years >have > > > > passed since he was diagnosed and I still keep that letter around >and > > > > re-read it every once in a while. For some reason it makes me feel > > >better > > > > when I'm doubting my instincts I don't know if it made a >difference, > > >but > > > > I like to think it did. And if nothing else, it sure helped me get >rid > > >of > > >a > > > > lot of anger! > > > > > > > > Here is the letter I wrote to my son's pediatrician.... > > > > > > > > > > > > =================================================================== > > > > Dear Dr. XXXXXXXXX, > > > > > > > > I don't know if you will remember me or not, but my name is Terri >Mason > > >and > > > > I have a son named Carl who will turn 6 years old this October. You > > >were > > > > Carl's pediatrician from March, 1995 through approximately June, >1997 > > >and > > >I > > > > have some information I would like to share with you regarding Carl. > > > > > > > > You were a very personable doctor and had a great " bed-side " manner. > > >You > > > > were always cheerful and you were great with Carl. I liked you > > >instantly. > > > > > > > > Carl was a pretty normal kid - or so I thought, until right before >you > > > > started seeing him. He had very frequent ear infections and the >normal > > > > coughs and sniffles, but until he was 18 months old nobody suspected > > > > anything else. In retrospect there were some early indicators that > > > > something might be amiss - the tachypnea, low blood sugar and > > >hypertonicity > > > > at birth as well as formula intolerance, high unexplained fevers and > > >trouble > > > > breast feeding, but nothing that would have been a big red flag. > > > > > > > > At about the age of 18 months he developed nystagmus which was >followed > > > > about 9 months later by progressively worsening optic nerve atrophy. > At > > > > first the ophthalmologist suspected a brain tumor, but that was >quickly > > > > ruled out and it was suggested that he be followed by neurology to >make > > >sure > > > > there was nothing else wrong. As I started to look for the cause of >the > > > > optic nerve atrophy, I found the search to be somewhat discouraging. > It > > > > seemed that optic nerve atrophy was either something you were born >with > > >or > > > > something that was part of a much bigger picture - usually metabolic >in > > > > nature - and those metabolic diseases were nasty, he certainly >didn't > > >have > > > > one of those! > > > > > > > > I'm one of those moms that likes to attribute everything out of the > > >ordinary > > > > to age or clumsiness. I'm kind of the opposite of " parentnoid " and >my > > > > friends often call me the " Queen of Denial " And of course, because > > >nobody > > > > really knew exactly what the nystagmus and optic nerve atrophy were > > >doing > > >to > > > > Carl's vision, I was the first one to attribute everything to his >visual > > > > impairment. In other words, if I am concerned enough to bring >something > > >up > > > > to a doctor - even casually, then there is probably reason to be > > >concerned. > > > > > > > > I came upon a disease called LHON - Leber's Hereditary Optic >Neuropathy. > > > > This was a mitochondrial disease that resulted in optic nerve >atrophy > > > > primarily in young men. Although it would have been out of the >ordinary > > >for > > > > someone as young as Carl to manifest the signs of this disease, I > > >thought > > >it > > > > was worth looking into. One of the things I really liked about the > > > > possibility of LHON is that it seemed relatively benign. Other than >the > > > > visual impairment that resulted - which was usually quite >significant, > > >that > > > > was usually the only symptom of the disease. When I brought this to >the > > > > attention of Carl's neurologist she checked into where we might be >able > > >to > > > > get the testing done and gave me the information. I then contacted >you > > >with > > > > that information. I don't suppose you remember what your response >was, > > >but > > > > you chuckled and said, " Optic nerve atrophy of unknown origin - it > > >happens > > > > all the time! We'll probably never find the cause. " You wouldn't >order > > >the > > > > tests, but they have since been done and were negative. > > > > > > > > I brought up other things like his clumsiness and the fact that he > > >seemed > > >to > > > > be walking funny, but you dismissed it as the rantings of an overly > > > > concerned parent and I was more than happy to accept that. > > > > > > > > I gave up looking. I figured we could deal with the vision problem >and > > >you > > > > were completely unconcerned, so why should I continue to look for > > >something? > > > > So Carl had these wiggly eyes? So he got unexplained high fevers >when > > >he > > > > wasn't sick? So he was a little clumsy? So his growth seemed to be > > >going > > > > from the 90th % to the 15th % - he was just slowing down a little, > > >right? > > > > Wrong. > > > > > > > > Carl was getting more clumsy as he grew older - not less. A >neuropsych > > > > evaluation was done which showed his motor skills were profoundly > > >delayed > > > > and his cognitive skills were deteriorating as well. You were still > > > > unconcerned, but the results were like a slap in the face with >reality > > >to > > > > me. There was something wrong and I had to find out what it was. > > > > > > > > I obtained copies of all of Carl's medical records and was literally > > > > floored. The neurological reports seemed to be documenting some >little > > >boy > > > > with a progressive neurodegenerative disorder - this couldn't be my >son, > > >he > > > > just had a visual impairment!?!? In an August ,1995 letter to you, > > >Carl's > > > > neurologist had written, " I am concerned that his nystagmus may be >an > > >early > > > > manifestation of a genetic/metabolic/possibly degenerative disorder > > > > (mitochondrial encephalopathy, lipidoses, etc..) " But you ignored >that? > > >No > > > > lab tests? No metabolic work up? You just continued to let me >think > > >that > > > > there was nothing wrong and that I was being paranoid? > > > > > > > > My first reaction? Disbelief, quickly followed by devastation as >the > > > > reality sunk in. And then? Anger. Anger specifically directed >towards > > >you > > > > for making me feel like an idiot. Making me feel like I was being > > > > overprotective and concerned about nothing. And then anger at >myself > > >for > > > > wasting an entire year that I could have spent researching and >looking > > >for > > > > the cause. I immediately started researching again and >unfortunately > > > > encountered much the same ignorance and attitude with your >successor, > > >but > > >at > > > > least he was willing to listen to the neurologist and geneticist. > > > > > > > > Carl and I went to Atlanta in April of 1998 for a muscle biopsy >looking > > >for > > > > evidence of a mitochondrial disease. The evidence was found. In > > >addition, > > > > the MRI showed spongiform deterioration in the brainstem/midbrain >area > > > > consistent with Leigh's disease - a particularly devastating > > >mitochondrial > > > > encephalomyopathy. > > > > > > > > I have been writing this letter to you for a year and a half, >waiting > > >for > > > > the day when I could tell you the actual diagnosis. A year and a >half - > > > > that's how long it has taken from the time I found out " something " >was > > > > really wrong, researched enough to have a pretty good idea of what >it > > >was > > > > and then convinced the doctors and insurance company to pursue the > > >testing. > > > > > > > > Mitochondrial diseases are very difficult to diagnosis. But I >didn't > > >expect > > > > you to make the diagnosis, I just expected you to make an effort. To >be > > >a > > > > facilitator, to help the process, not be a roadblock that I had to > > >overcome. > > > > > > > > My intention is not to place blame or make you feel bad, my >intention is > > >to > > > > teach. If next time you read the notes a little more carefully, >take > > >the > > > > concerns of another doctor a little more seriously or just think >twice > > > > before dismissing a first time mom as " parentnoid " , then that's all >I > > >could > > > > ask for. > > > > > > > > Respectfully and Sincerely, > > > > > > > > Terri Mason > > > > > > > > Mom to Carl,5 ½ - Leigh's disease characterized by nystagmus, optic > > >nerve > > > > atrophy, incoordination, developmental delay, hyperreflexia, ankle > > >clonus, > > > > positive Babinskis, ataxia, tremor, dysmetria, dysarthria, motor > > >apraxia, > > > > fatigue, speech apraxia and the most adorable little boy on earth! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > > > > Get your FREE download of MSN Explorer at > > >http://explorer.msn.com/intl.asp. > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > >questions. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 In a message dated 4/21/02 9:30:22 AM Pacific Daylight Time, lawblond7@... writes: << He had sever stomach problems and this wonam had the gall to write in the chart that I was an over reactive crazy mother adnd that there was nothing seriously wrong with Clays stomach. >> The root problem is not with these specific doctors/comments but the " fad " of diagnosing MSBP/pediatric falsfication/factitious disorder (all synonyms), OR using comments such as this GI doc wrote to claim a " history " as a basis for diagnosing one of these disorders. had a 1st year medical student write " munchuasen syndrome by proxy suspected " in his chart in KC 6 years ago because he had 4 admissions in the past couple of months (a pneumonia/asthma, for which he was on IV antibiotics, but also steroids which decreased his immune system, which made him susceptible to the next admission for a left septic hip, then less than a wk later for joint effusions in his OTHER knee, hip, then several wks later for losing all sensation (to pinprick, etc.) in the skin/nerves of his upper leg.) I insisted on a case conference, the specialists all agreed that I didn't do anything, and that the skin/nerve problem was from a surgery injury from the septic hip. Yet, that one comment has led to 2 other " suspicions " during the last 4 years while we searched for an answer to 's problems. We need to be rationale, polite, professional, (smart!) about these judgmental doctors (including reporting them to JCAHO on their www.jcaho.org website if they were hospital based), but we also need to be POSITIVE and focus on EDUCATION. Educate about mito, educate about the lack of standard of practice clinical criteria used in diagnosing MSBP. Because now, the " fad " has extended to accusing/diagnosing moms of ill kids, mito included!!! And, not for allegedly inducing illness, but for " overreaction " or " exaggeration. " Look at the pro MSBP websites...these terms are all included, and that is what I was told straightforward last wk-that having a legitimate diagnosis does NOT exclude MSBP diagnosis at all. Yes, we do need to give " kudos " to those doctors who care..and there are many, many, many of them out there. But, this goes beyond complaining about the other docs. This has to do with preserving our families and protecting our children. Dena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 oops....I forgot one more thing. I have done *extensive* research into MSBP/factitious disorders since being accused. What I have found is that, there are only a couple of doctors in the USA (Marc Feldman in Birmingham, Alabama and Herbert Schrier in Oakland, although they don't seem to publish together), along with Louisa Lasher (a former CPS social worker who is now a self acclaimed expert and works with Feldman) who are really spreading/exaggerating the rare MSBP diagnosis. I must say that Feldman has done an excellent job in publicity. Do a web search on MSBP and you will find many, many links to his various web pages, which then also link you to his offer for hire as an expert for lawyers, doctors, courts, etc. He has also been on many web interviews, tv shows, etc. He has made this a " fad " diagnosis through publicity! I know this isn't a comfortable topic, especially when we are all dealing with children with chronic/serious/life threatening medical issues, but if we all " fought back " for parental advocacy rights and to expose the truth of junk science (in the MSBP profiling, etc.), then we would make it easier for the care of our own children and for others who will face these same issues. Terri's letter is a good example-she presents her situation without a lot of emotion, but with the facts. I spoke before the local JCAHO survey several wks ago and did the same-with the facts. Get your facts together (copies of the chart, etc.) and support your concerns about how you are being labeled. Forward a copy of that (with the appropriate chart documentation) to JCAHO, state medical licensing boards, local media. Ken, I know you are a mito dad and a doctor, and I'm not on a witch hunt against doctors. But, these docs that are accusing are contributing to tearing families apart. These are not benign comments. If someone is hurting their child by poisoning, then call it that and put them in jail. If they are perceived of " doctor shopping " , then ask them why and work together to address mutual concerns. Since when is searching for the best expertise considered child abuse??? We've got to unify on this issue, keep supporting those wonderful docs who work tirelessly to find answers/cures to mito disease, but also to expose violations in " do no harm " in the medical community. Unfortunately, because of the multi-organ system involvement of mito disease, we are much more susceptible to such accusations/harm. Dena Quote Link to comment Share on other sites More sharing options...
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