Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 Ruth, I totally see what you are saying. There are times at the hospital where they make you feel that you want your child to be sick. They can't find a cause so they really treat you like you're a nut, or that you get some kind of thrill out of it. Even family members have accused us of just being pessimistic and " looking for something to be wrong " . I guess if you haven't been affected directly by this horrible disease, you just can't understand it. On another note, thank you for your reply about the gastro doctor for Becca. I have a call in to Dr. Stein, and hopefully we'll get some answers soon. On a good note, her appetite is back and she is gaining weight again. One step forward and two steps back I guess. Rhonda-Mom to Becca the Brave-who has suffered so much and still smiles. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Oh,Kathy this is so wrong.You would not want to wish what we have gone through on your worst enemy.I am sure that parents of children with a rare disorder, and especially mito disorders,don't need to embellish their children's syptoms, the reality is bad enough.Perhaps some parents get so anxious that every runny nose or skin rash sends them running to the doctors, but as most of us have learned is that sometimes common things like this end up being a real concern for a mito kid.I remember when I first joined this list and it was such a revelation, a lot of Jonah's problems that I thought were just strange,or unimportant were a common thread tying these kids together.The risk I worry about and the one I am now living with is the having your child treated by a doxtor who does not specialize in the particular rare disorder your child may have and then symptoms that may be common say in complex 1 kids seem bizarre and suspect and don't " fit in " to any one category as docs love to categorize an illness.Look at our case for example, Jonah has a history of vomiting, aspiration, failure to thrive,carnitine deficiency,dysmotility, hypotonia, he is nonverbal and has a progressing hearing loss.He crashes when he gets a flu, or what have you.Chicken Pox almost killed him last year.He is intermittently tpn dependent and has agtbe and a nissan fundoplacation.Comparitively, he sounds like the average mito kid on this list.Some are more severe than him, some less, but as parents to a child like this we know these are all common symptoms, to a doctor who rarely sees this it is what a strange array of problems with no definitve category...they get suspicious and start looking at the parents as the cause.This is dangerous.Our son has been out of our home dut to a hospital stay and subsequent removal by child protection for 6 months.He is confused and having negative behavior problems.We don't sleep, eat well, function only minimally.Our other son has nightmares and is very upset.We miss him so much it kills us.This is wrong and to just accuse parents randomly to weed out the bad ones is destructive.Doctors have to start making the effort to understand these disorders better or know when to say I don't know and send you to someone who does, before accusing.Anyway, enough rambling...I hope you see this way is right. > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: scary thought... >Date: Sun, 12 Sep 1999 08:35:24 -0600 > > > > >I can't imagine how sick a parent would be to want to see their child > >sufferthrough repeated testing and tube feedings and life threatening > >episodes. > >The really truly scary thing is that it *does* happen, and unfortunately, >kids who have a MBP mom mimic mito disease more than anything and thus end >up in a metabolic clinic because it's the last area of diagnosis. > >The thing is, there have even been people here on the lists (and I include >all of the mito related lists over the last few years) whose children had >*every* symptom from every other kid on the list, which is pretty unlikely. >With a non-verbal child and for the most part, small verbal children, the >only info a doctor goes by is what mom and dad say. Part of the problem >goes into how things get described, like for instance - what is a >stroke-like episode? If it's described on the list, it may be an absense >seizure or any number of things. The you look at your own child, knowing >that she is high in lactic acid and that stroke like symptoms go with it >for >MELAS. You want the diagnosis, and you are worried that not reporting it >may cause your child to get less care - and you do. Actually, the child is >mentally retarded, is just daydreaming but the doctor notes that around >you, >the child has " strokes " . It happens. > >It also happens that a really ill child is poorly diagnosed because mom >sees >every symptom in the world in her child. Then when things don't get >better, >she " pushes " the child - to exercise too much maybe, or to eat something >they react to, to get the doctors to " believe " or treat and find something >treatable. > >I would rather see every parent investigated if it would keep children safe >from " escalations " that parents do to get the diagnosis. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Oh,Kathy this is so wrong.You would not want to wish what we have gone through on your worst enemy.I am sure that parents of children with a rare disorder, and especially mito disorders,don't need to embellish their children's syptoms, the reality is bad enough.Perhaps some parents get so anxious that every runny nose or skin rash sends them running to the doctors, but as most of us have learned is that sometimes common things like this end up being a real concern for a mito kid.I remember when I first joined this list and it was such a revelation, a lot of Jonah's problems that I thought were just strange,or unimportant were a common thread tying these kids together.The risk I worry about and the one I am now living with is the having your child treated by a doxtor who does not specialize in the particular rare disorder your child may have and then symptoms that may be common say in complex 1 kids seem bizarre and suspect and don't " fit in " to any one category as docs love to categorize an illness.Look at our case for example, Jonah has a history of vomiting, aspiration, failure to thrive,carnitine deficiency,dysmotility, hypotonia, he is nonverbal and has a progressing hearing loss.He crashes when he gets a flu, or what have you.Chicken Pox almost killed him last year.He is intermittently tpn dependent and has agtbe and a nissan fundoplacation.Comparitively, he sounds like the average mito kid on this list.Some are more severe than him, some less, but as parents to a child like this we know these are all common symptoms, to a doctor who rarely sees this it is what a strange array of problems with no definitve category...they get suspicious and start looking at the parents as the cause.This is dangerous.Our son has been out of our home dut to a hospital stay and subsequent removal by child protection for 6 months.He is confused and having negative behavior problems.We don't sleep, eat well, function only minimally.Our other son has nightmares and is very upset.We miss him so much it kills us.This is wrong and to just accuse parents randomly to weed out the bad ones is destructive.Doctors have to start making the effort to understand these disorders better or know when to say I don't know and send you to someone who does, before accusing.Anyway, enough rambling...I hope you see this way is right. > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: scary thought... >Date: Sun, 12 Sep 1999 08:35:24 -0600 > > > > >I can't imagine how sick a parent would be to want to see their child > >sufferthrough repeated testing and tube feedings and life threatening > >episodes. > >The really truly scary thing is that it *does* happen, and unfortunately, >kids who have a MBP mom mimic mito disease more than anything and thus end >up in a metabolic clinic because it's the last area of diagnosis. > >The thing is, there have even been people here on the lists (and I include >all of the mito related lists over the last few years) whose children had >*every* symptom from every other kid on the list, which is pretty unlikely. >With a non-verbal child and for the most part, small verbal children, the >only info a doctor goes by is what mom and dad say. Part of the problem >goes into how things get described, like for instance - what is a >stroke-like episode? If it's described on the list, it may be an absense >seizure or any number of things. The you look at your own child, knowing >that she is high in lactic acid and that stroke like symptoms go with it >for >MELAS. You want the diagnosis, and you are worried that not reporting it >may cause your child to get less care - and you do. Actually, the child is >mentally retarded, is just daydreaming but the doctor notes that around >you, >the child has " strokes " . It happens. > >It also happens that a really ill child is poorly diagnosed because mom >sees >every symptom in the world in her child. Then when things don't get >better, >she " pushes " the child - to exercise too much maybe, or to eat something >they react to, to get the doctors to " believe " or treat and find something >treatable. > >I would rather see every parent investigated if it would keep children safe >from " escalations " that parents do to get the diagnosis. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Oh,Kathy this is so wrong.You would not want to wish what we have gone through on your worst enemy.I am sure that parents of children with a rare disorder, and especially mito disorders,don't need to embellish their children's syptoms, the reality is bad enough.Perhaps some parents get so anxious that every runny nose or skin rash sends them running to the doctors, but as most of us have learned is that sometimes common things like this end up being a real concern for a mito kid.I remember when I first joined this list and it was such a revelation, a lot of Jonah's problems that I thought were just strange,or unimportant were a common thread tying these kids together.The risk I worry about and the one I am now living with is the having your child treated by a doxtor who does not specialize in the particular rare disorder your child may have and then symptoms that may be common say in complex 1 kids seem bizarre and suspect and don't " fit in " to any one category as docs love to categorize an illness.Look at our case for example, Jonah has a history of vomiting, aspiration, failure to thrive,carnitine deficiency,dysmotility, hypotonia, he is nonverbal and has a progressing hearing loss.He crashes when he gets a flu, or what have you.Chicken Pox almost killed him last year.He is intermittently tpn dependent and has agtbe and a nissan fundoplacation.Comparitively, he sounds like the average mito kid on this list.Some are more severe than him, some less, but as parents to a child like this we know these are all common symptoms, to a doctor who rarely sees this it is what a strange array of problems with no definitve category...they get suspicious and start looking at the parents as the cause.This is dangerous.Our son has been out of our home dut to a hospital stay and subsequent removal by child protection for 6 months.He is confused and having negative behavior problems.We don't sleep, eat well, function only minimally.Our other son has nightmares and is very upset.We miss him so much it kills us.This is wrong and to just accuse parents randomly to weed out the bad ones is destructive.Doctors have to start making the effort to understand these disorders better or know when to say I don't know and send you to someone who does, before accusing.Anyway, enough rambling...I hope you see this way is right. > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: scary thought... >Date: Sun, 12 Sep 1999 08:35:24 -0600 > > > > >I can't imagine how sick a parent would be to want to see their child > >sufferthrough repeated testing and tube feedings and life threatening > >episodes. > >The really truly scary thing is that it *does* happen, and unfortunately, >kids who have a MBP mom mimic mito disease more than anything and thus end >up in a metabolic clinic because it's the last area of diagnosis. > >The thing is, there have even been people here on the lists (and I include >all of the mito related lists over the last few years) whose children had >*every* symptom from every other kid on the list, which is pretty unlikely. >With a non-verbal child and for the most part, small verbal children, the >only info a doctor goes by is what mom and dad say. Part of the problem >goes into how things get described, like for instance - what is a >stroke-like episode? If it's described on the list, it may be an absense >seizure or any number of things. The you look at your own child, knowing >that she is high in lactic acid and that stroke like symptoms go with it >for >MELAS. You want the diagnosis, and you are worried that not reporting it >may cause your child to get less care - and you do. Actually, the child is >mentally retarded, is just daydreaming but the doctor notes that around >you, >the child has " strokes " . It happens. > >It also happens that a really ill child is poorly diagnosed because mom >sees >every symptom in the world in her child. Then when things don't get >better, >she " pushes " the child - to exercise too much maybe, or to eat something >they react to, to get the doctors to " believe " or treat and find something >treatable. > >I would rather see every parent investigated if it would keep children safe >from " escalations " that parents do to get the diagnosis. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Dear , I am saddened beyond words to read your story. It so closely mirrors my own experience, which also has had a profound impact on our family. We were blessed with good timing by our neurologist to save us from certain charges of Munchausens. I have always wanted to go back to the ignorant, arrogant doctor (he was a respiratory specialist) and show him that I was NOT crazy, and that my daughter (who has had to fight to stay alive every day of her 18 months of life) is alive and well--no thanks to him! I strongly echo your words of advice regarding mtio specialists. This is such a misunderstood, misdiagnosed family of problems and it is not something that should be handled by the untrained, or uninformed. Do you know that after Lexi was diagnosed correctly with her mito problems, the doctor who made the charges never even had the courage to come back and say sorry, or " I was wrong " or anything at all. It was truly one of the most heart wrenching experiences of my life, and he couldn't even admit that he had made a mistake. I will pray for you and Jonah, and your family during this tremendously difficult time. Hang in there! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Dear , I am saddened beyond words to read your story. It so closely mirrors my own experience, which also has had a profound impact on our family. We were blessed with good timing by our neurologist to save us from certain charges of Munchausens. I have always wanted to go back to the ignorant, arrogant doctor (he was a respiratory specialist) and show him that I was NOT crazy, and that my daughter (who has had to fight to stay alive every day of her 18 months of life) is alive and well--no thanks to him! I strongly echo your words of advice regarding mtio specialists. This is such a misunderstood, misdiagnosed family of problems and it is not something that should be handled by the untrained, or uninformed. Do you know that after Lexi was diagnosed correctly with her mito problems, the doctor who made the charges never even had the courage to come back and say sorry, or " I was wrong " or anything at all. It was truly one of the most heart wrenching experiences of my life, and he couldn't even admit that he had made a mistake. I will pray for you and Jonah, and your family during this tremendously difficult time. Hang in there! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 Dear , I am saddened beyond words to read your story. It so closely mirrors my own experience, which also has had a profound impact on our family. We were blessed with good timing by our neurologist to save us from certain charges of Munchausens. I have always wanted to go back to the ignorant, arrogant doctor (he was a respiratory specialist) and show him that I was NOT crazy, and that my daughter (who has had to fight to stay alive every day of her 18 months of life) is alive and well--no thanks to him! I strongly echo your words of advice regarding mtio specialists. This is such a misunderstood, misdiagnosed family of problems and it is not something that should be handled by the untrained, or uninformed. Do you know that after Lexi was diagnosed correctly with her mito problems, the doctor who made the charges never even had the courage to come back and say sorry, or " I was wrong " or anything at all. It was truly one of the most heart wrenching experiences of my life, and he couldn't even admit that he had made a mistake. I will pray for you and Jonah, and your family during this tremendously difficult time. Hang in there! ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 I have to agree with on this one, too. maybe it's because I've been in those horrible shoes, but whatever the reason, I think there has to be a better way to discover the *real* MBP parents other than accuse every parent of a chronically ill child with unusual symptoms. Nothing about Lexi has ever been " usual " so we totally fit into that realm of " strange looking circumstances " . I wouldn't wish this upon my very worst enemy. It was by far one of the lowest moments in my life--it made me doubt my every move, no kidding. In fact, I was (and remain) much more reluctant to take Lexi in for medical attention for fear that someone will decide that I'm too protective, or too involved, or too whatever and that it warrants taking my child from our home. Not gonna happen, you think? I think could beg to differ.... ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 I have to agree with on this one, too. maybe it's because I've been in those horrible shoes, but whatever the reason, I think there has to be a better way to discover the *real* MBP parents other than accuse every parent of a chronically ill child with unusual symptoms. Nothing about Lexi has ever been " usual " so we totally fit into that realm of " strange looking circumstances " . I wouldn't wish this upon my very worst enemy. It was by far one of the lowest moments in my life--it made me doubt my every move, no kidding. In fact, I was (and remain) much more reluctant to take Lexi in for medical attention for fear that someone will decide that I'm too protective, or too involved, or too whatever and that it warrants taking my child from our home. Not gonna happen, you think? I think could beg to differ.... ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 1999 Report Share Posted September 13, 1999 I have to agree with on this one, too. maybe it's because I've been in those horrible shoes, but whatever the reason, I think there has to be a better way to discover the *real* MBP parents other than accuse every parent of a chronically ill child with unusual symptoms. Nothing about Lexi has ever been " usual " so we totally fit into that realm of " strange looking circumstances " . I wouldn't wish this upon my very worst enemy. It was by far one of the lowest moments in my life--it made me doubt my every move, no kidding. In fact, I was (and remain) much more reluctant to take Lexi in for medical attention for fear that someone will decide that I'm too protective, or too involved, or too whatever and that it warrants taking my child from our home. Not gonna happen, you think? I think could beg to differ.... ruth Quote Link to comment Share on other sites More sharing options...
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