Guest guest Posted June 8, 1999 Report Share Posted June 8, 1999 ruth, could someone on this list contact this woman to ask her if she knows about mito or ask her if the Dr.s could check her child for this? I know that might be a wierd one to ask, but we are all human and she must somehow be able to be reached or someone that has something to do with her or the little girl, know what I mean? This breaks my heart. This is like my dilemma with as I know he has this metabolic problem, but the mom not being able to deal with a special needs kid has exacerbated things to a far worse status now with him and here we are trying to sort out the illness symptoms from the abuse symptoms and get help for both and here I am trying to educate the state social workers on this illness to get him the medical care he needs. They say, " How do you spell that (mitochondrial)? " S. scary thought... >From: Hilandgang@... > >Hi All, >Did anyone else catch the Dateline program tongiht (Tues) about the mother >with the chronically ill daughter? It seems this woman has a little girl who >has unexplained vomiting, seizures, muscle problems, asthma, and chronic >infections (sounding familiar to anyone here???). Anyway, her little girl >has been hospitalized many times and received much media attention. So about >three years ago, the hospital nurses became suspicious of the many illnesses >her daughter has had and accused her of Munchausen's by Proxy. They took her >little girl away and have a trial going against her right now. > >Seeing this program brought back in far too much detail my own experiences of >being in the hospital with Lexi 20+ times now. I, too, was accused of having >Munchausen's by Proxy--AND THEN A WEEK LATER HER MITOCHONDRIAL DISORDER WAS >FOUND. I just can't help but think that if answers hadn't surfaced when they >did, I might be in her shoes. Like I have nothing better to do with my life >than to watch my kid suffer through horribly painful medical procedures, >undergo surgeries, and have tubes running out of her head. Now, I don't know >if this woman is guilty or innocent (I would vote innocent), but it certainly >brought home a very vivid point. I will never forget the horror I felt when >this buffoon sat in his chair knowing NOTHING of me or my family and tried to >make us fit into his little cookie cutter mold of one diagnosis or the other, >and when that didn't work, he brought out the bit about Munchausen's. In >about 3 minutes flat he devastated me. Completely and totally destroyed all >my confidence in myself as a person, as a mother, as a woman, as anything. > >I know of one other person this has also happened to. Has anyone else had >this experience? Sorry to ramble on, but this one really hit close to home >and I can't sleep. > >Any thoughts? > >ruth > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 , I am sending an email to dateline@...--they ran the story and I'll ask them to forward my letter on. i had the same thoughts regarding the dx oif mito issues. Like the UMDF motto says, 'mito WHAT? " ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 1999 Report Share Posted September 10, 1999 , I agree with your analysis of the doctors: C-L-U-E-L-E-S-S in many cases out here. I am very fortunate to have a great pediatrician, who was tenacious enough to keep looking until he found the mito problem. But, we have also had the experience of going to the hospital when she is a lovely shade of blue (periwinkle, I presume) and have the doctors say, " She has a mitoWHAT? Is that having to do with her heart? " And this was the doc on call. SCARY!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 >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 This is so true Ruth....we are even scared to take our very healthy 4 yr old for a visit to a doctor should he need to go for any reason.Parents who get accused of this become paranoid and mistrusting of medical professionals and may very well put their ill child at risk for fear of going to the doctors when something goes wrong.We will always be waiting, terrified of any thing going wrong with Jonah when he comes home.We will never what to take chances with Jonah and so that puts us back at risk of being parents who always bring their child to the doctor's.The thing is that we have learned that if we wait too long we get chastised for bringing him in too late and if we rush in with him we get chastised for being overly cautious.You can't win!My only regret is not getting Jonah to a mito doctor sooner.Please all of you do this before this should(god forbid) happen to you. >From: Hilandgang@... >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: scary thought... >Date: Mon, 13 Sep 1999 11:33:34 EDT > >From: Hilandgang@... > >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 14, 1999 Report Share Posted September 14, 1999 I don't understand. If he has a diagnosed disease, why are they still doing this to you? I just can't understand why a documented medical disorder wouldn't hold up in court. This system is absurd! I am on the opposite end of the spectrum I guess. My son is very healthy yet the doctors keep pushing and pushing for more and more invasive testing. I keep telling them " NO! " I don't want to put my son through endless MRIs, muscle biopsies, EMGs, blood work, etc. is healthy (just a few problems here and there, but nothing life-threatening at this point). I don't want him having any tests unless they can help him by knowing the results. I feel like it is the doctors who are wishing him to be ill, not me! No mother wants to see their child suffer; not from illness and not from so-called " medical advances. " I really feel for you. I hope the doctors who did this to you get what's coming to them in the end. It really makes you stop and think about how ignorant some doctors can be. Best to you and your family, " .L. " wrote: > > > This is so true Ruth....we are even scared to take our very healthy 4 yr old > for a visit to a doctor should he need to go for any reason.Parents who get > accused of this become paranoid and mistrusting of medical professionals and > may very well put their ill child at risk for fear of going to the doctors > when something goes wrong.We will always be waiting, terrified of any thing > going wrong with Jonah when he comes home.We will never what to take chances > with Jonah and so that puts us back at risk of being parents who always > bring their child to the doctor's.The thing is that we have learned that if > we wait too long we get chastised for bringing him in too late > and if we rush in with him we get chastised for being overly cautious.You > can't win!My only regret is not getting Jonah to a mito doctor sooner.Please > all of you do this before this should(god forbid) happen to you. > > > >From: Hilandgang@... > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: scary thought... > >Date: Mon, 13 Sep 1999 11:33:34 EDT > > > >From: Hilandgang@... > > > >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 14, 1999 Report Share Posted September 14, 1999 I don't understand. If he has a diagnosed disease, why are they still doing this to you? I just can't understand why a documented medical disorder wouldn't hold up in court. This system is absurd! I am on the opposite end of the spectrum I guess. My son is very healthy yet the doctors keep pushing and pushing for more and more invasive testing. I keep telling them " NO! " I don't want to put my son through endless MRIs, muscle biopsies, EMGs, blood work, etc. is healthy (just a few problems here and there, but nothing life-threatening at this point). I don't want him having any tests unless they can help him by knowing the results. I feel like it is the doctors who are wishing him to be ill, not me! No mother wants to see their child suffer; not from illness and not from so-called " medical advances. " I really feel for you. I hope the doctors who did this to you get what's coming to them in the end. It really makes you stop and think about how ignorant some doctors can be. Best to you and your family, " .L. " wrote: > > > This is so true Ruth....we are even scared to take our very healthy 4 yr old > for a visit to a doctor should he need to go for any reason.Parents who get > accused of this become paranoid and mistrusting of medical professionals and > may very well put their ill child at risk for fear of going to the doctors > when something goes wrong.We will always be waiting, terrified of any thing > going wrong with Jonah when he comes home.We will never what to take chances > with Jonah and so that puts us back at risk of being parents who always > bring their child to the doctor's.The thing is that we have learned that if > we wait too long we get chastised for bringing him in too late > and if we rush in with him we get chastised for being overly cautious.You > can't win!My only regret is not getting Jonah to a mito doctor sooner.Please > all of you do this before this should(god forbid) happen to you. > > > >From: Hilandgang@... > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: scary thought... > >Date: Mon, 13 Sep 1999 11:33:34 EDT > > > >From: Hilandgang@... > > > >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 14, 1999 Report Share Posted September 14, 1999 I don't understand. If he has a diagnosed disease, why are they still doing this to you? I just can't understand why a documented medical disorder wouldn't hold up in court. This system is absurd! I am on the opposite end of the spectrum I guess. My son is very healthy yet the doctors keep pushing and pushing for more and more invasive testing. I keep telling them " NO! " I don't want to put my son through endless MRIs, muscle biopsies, EMGs, blood work, etc. is healthy (just a few problems here and there, but nothing life-threatening at this point). I don't want him having any tests unless they can help him by knowing the results. I feel like it is the doctors who are wishing him to be ill, not me! No mother wants to see their child suffer; not from illness and not from so-called " medical advances. " I really feel for you. I hope the doctors who did this to you get what's coming to them in the end. It really makes you stop and think about how ignorant some doctors can be. Best to you and your family, " .L. " wrote: > > > This is so true Ruth....we are even scared to take our very healthy 4 yr old > for a visit to a doctor should he need to go for any reason.Parents who get > accused of this become paranoid and mistrusting of medical professionals and > may very well put their ill child at risk for fear of going to the doctors > when something goes wrong.We will always be waiting, terrified of any thing > going wrong with Jonah when he comes home.We will never what to take chances > with Jonah and so that puts us back at risk of being parents who always > bring their child to the doctor's.The thing is that we have learned that if > we wait too long we get chastised for bringing him in too late > and if we rush in with him we get chastised for being overly cautious.You > can't win!My only regret is not getting Jonah to a mito doctor sooner.Please > all of you do this before this should(god forbid) happen to you. > > > >From: Hilandgang@... > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: scary thought... > >Date: Mon, 13 Sep 1999 11:33:34 EDT > > > >From: Hilandgang@... > > > >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 16, 1999 Report Share Posted September 16, 1999 They say they can have these suspicions as nothing is written in stone as far as syptoms and tesying for mito disorders.Everything can or cannot be a factor of the disease.If my son had something more recognized like Cystic Fibrosis say, we would not have this same problem.Parents of kids with a mito disorder are at high risk of false abuse accusations. > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: scary thought... >Date: Mon, 13 Sep 1999 16:35:55 -0700 > > > >I don't understand. If he has a diagnosed disease, why are they still >doing this to you? I just can't >understand why a documented medical disorder wouldn't hold up in court. >This system is absurd! > >I am on the opposite end of the spectrum I guess. My son is very healthy >yet the doctors keep pushing and >pushing for more and more invasive testing. I keep telling them " NO! " I >don't want to put my son through >endless MRIs, muscle biopsies, EMGs, blood work, etc. is healthy >(just a few problems here and >there, but nothing life-threatening at this point). I don't want him having >any tests unless they can help >him by knowing the results. I feel like it is the doctors who are wishing >him to be ill, not me! > >No mother wants to see their child suffer; not from illness and not from >so-called " medical advances. " I >really feel for you. I hope the doctors who did this to you get what's >coming to them in the end. It >really makes you stop and think about how ignorant some doctors can be. > >Best to you and your family, > > > " .L. " wrote: > > > > > > > This is so true Ruth....we are even scared to take our very healthy 4 yr >old > > for a visit to a doctor should he need to go for any reason.Parents who >get > > accused of this become paranoid and mistrusting of medical professionals >and > > may very well put their ill child at risk for fear of going to the >doctors > > when something goes wrong.We will always be waiting, terrified of any >thing > > going wrong with Jonah when he comes home.We will never what to take >chances > > with Jonah and so that puts us back at risk of being parents who always > > bring their child to the doctor's.The thing is that we have learned that >if > > we wait too long we get chastised for bringing him in too late > > and if we rush in with him we get chastised for being overly >cautious.You > > can't win!My only regret is not getting Jonah to a mito doctor >sooner.Please > > all of you do this before this should(god forbid) happen to you. > > > > > > >From: Hilandgang@... > > >Reply-To: Mitoonelist > > >To: Mitoonelist > > >Subject: Re: scary thought... > > >Date: Mon, 13 Sep 1999 11:33:34 EDT > > > > > >From: Hilandgang@... > > > > > >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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