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 June 9, 1999 Report Share Posted June 9, 1999 ruth, this is really nice of you to take the time and effort to reach out to help others. Hat off to you! S. Re: scary thought... >From: Hilandgang@... > >, >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 June 9, 1999 Report Share Posted June 9, 1999 And what is hard too you guys is when they are doing something you KNOW is really bad like turning blue or 106 fever or not able to walk all of a sudden but by the time you get to the Dr. they seem better and the Dr. thinks you are making it up or overreacting because it just couldn't have been that bad if the kid is OK now. Or they say bring them back WHEN they are doing these things but then they don't know what to do anyway with them. WHen Shane kept turning blue on me as a baby (usually when he ate) they finally did a chest X-ray and said his heart was slightly enlarged but oh, well, it didn't matter. The next time they said they would check his blood gases, but we had moved by then and someone thought it was the nitrates in the Phx, AZ wells which turn to nitrites in the body and were turning these babies blue? Who knows, as he also had asthma. It gets so confusing when there are so many people in the family and they are all doing the strange things at all odd times and you yourself are sick and confused and no one can put it all together. S. S. Re: Scary Thought... >From: Hilandgang@... > >rhonda, >you said it so well--even people who mean well can hurt when they insinuate >that we are " over reacting " --but how do you *over react* when you kid turns >blue, or won't eat, or is in pain??? I personally feel that you can't react >ENOUGH! > >Glad to hear. though, that Becca is feeling better. I see Idries tomorrow >with Lexi for the poop thing--again. Will keep you posted. > >ruth > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 1999 Report Share Posted June 9, 1999 And what is hard too you guys is when they are doing something you KNOW is really bad like turning blue or 106 fever or not able to walk all of a sudden but by the time you get to the Dr. they seem better and the Dr. thinks you are making it up or overreacting because it just couldn't have been that bad if the kid is OK now. Or they say bring them back WHEN they are doing these things but then they don't know what to do anyway with them. WHen Shane kept turning blue on me as a baby (usually when he ate) they finally did a chest X-ray and said his heart was slightly enlarged but oh, well, it didn't matter. The next time they said they would check his blood gases, but we had moved by then and someone thought it was the nitrates in the Phx, AZ wells which turn to nitrites in the body and were turning these babies blue? Who knows, as he also had asthma. It gets so confusing when there are so many people in the family and they are all doing the strange things at all odd times and you yourself are sick and confused and no one can put it all together. S. S. Re: Scary Thought... >From: Hilandgang@... > >rhonda, >you said it so well--even people who mean well can hurt when they insinuate >that we are " over reacting " --but how do you *over react* when you kid turns >blue, or won't eat, or is in pain??? I personally feel that you can't react >ENOUGH! > >Glad to hear. though, that Becca is feeling better. I see Idries tomorrow >with Lexi for the poop thing--again. Will keep you posted. > >ruth > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 1999 Report Share Posted June 9, 1999 And what is hard too you guys is when they are doing something you KNOW is really bad like turning blue or 106 fever or not able to walk all of a sudden but by the time you get to the Dr. they seem better and the Dr. thinks you are making it up or overreacting because it just couldn't have been that bad if the kid is OK now. Or they say bring them back WHEN they are doing these things but then they don't know what to do anyway with them. WHen Shane kept turning blue on me as a baby (usually when he ate) they finally did a chest X-ray and said his heart was slightly enlarged but oh, well, it didn't matter. The next time they said they would check his blood gases, but we had moved by then and someone thought it was the nitrates in the Phx, AZ wells which turn to nitrites in the body and were turning these babies blue? Who knows, as he also had asthma. It gets so confusing when there are so many people in the family and they are all doing the strange things at all odd times and you yourself are sick and confused and no one can put it all together. S. S. Re: Scary Thought... >From: Hilandgang@... > >rhonda, >you said it so well--even people who mean well can hurt when they insinuate >that we are " over reacting " --but how do you *over react* when you kid turns >blue, or won't eat, or is in pain??? I personally feel that you can't react >ENOUGH! > >Glad to hear. though, that Becca is feeling better. I see Idries tomorrow >with Lexi for the poop thing--again. Will keep you posted. > >ruth > >>Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 1999 Report Share Posted September 8, 1999 In a message dated 9/8/99 5:52:22 PM Eastern Daylight Time, Hilandgang@... writes: << , 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 >> Ruth------you go girl! Imagine how you may help this family as well as their child. I admire your spirit! and Complex2-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 1999 Report Share Posted September 9, 1999 rhonda, you said it so well--even people who mean well can hurt when they insinuate that we are " over reacting " --but how do you *over react* when you kid turns blue, or won't eat, or is in pain??? I personally feel that you can't react ENOUGH! Glad to hear. though, that Becca is feeling better. I see Idries tomorrow with Lexi for the poop thing--again. Will keep you posted. ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 1999 Report Share Posted September 12, 1999 Hi Ruth,I wish I had seen that show,it probably would felt like a show about our case too.Jonah has been diagnosed with mito complex 1 and because of the ignorance here surrounding the understanding of mito disease I too have been charged with Munchhausen Syndrome by Proxy...as you know.We can't bringhim to a specialist in mito diseases either to clear ourselves because he is now in foster care while we await the end of the investigation.They brought up this allegation(it was Jonah's GI doctor)without any proof and could make it stick because of their reputation as a children's hospital.We have had to go through a criminal investigation, which found nothing so it was dropped,psychological evaluations which were all positive and normal and now the last step is a review of all the medical records, which is being done by a small town pediatrician with no knowledge base of mitochondrial disease.My husband and I are terrified and our 4 yr old is traumatized beyond belief.Jonah went through all the same problems and surgeries and hospitilizations as many of you on this list.Beware.If this can happen ti\o us it can happen to any family with a mitochondrial child.PLEASE bring you child to a centre or specialist in mito diseases before this happens to you!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.We live in constant fear of the next setback.We never knew when Jonah was going to go downhill as it always happened so quick, it could be something as mundane as the flu anf it would land him in the ER in distress.He is one of two joys in our lives the other being our other son.He is the sweetest, happiest baby and is doing really well right now,aside from a respiratory prblem according the the foster parents.He still is at 22 pounds but that is still good.Please be careful everyone, it has shattered our family, thankfully we are a strong one so we will fight for Jonah until the end! >From: Hilandgang@... >Reply-To: Mitoonelist >To: mitoonelist >Subject: scary thought... >Date: Wed, 8 Sep 1999 02:31:01 EDT > >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 12, 1999 Report Share Posted September 12, 1999 Hi Ruth,I wish I had seen that show,it probably would felt like a show about our case too.Jonah has been diagnosed with mito complex 1 and because of the ignorance here surrounding the understanding of mito disease I too have been charged with Munchhausen Syndrome by Proxy...as you know.We can't bringhim to a specialist in mito diseases either to clear ourselves because he is now in foster care while we await the end of the investigation.They brought up this allegation(it was Jonah's GI doctor)without any proof and could make it stick because of their reputation as a children's hospital.We have had to go through a criminal investigation, which found nothing so it was dropped,psychological evaluations which were all positive and normal and now the last step is a review of all the medical records, which is being done by a small town pediatrician with no knowledge base of mitochondrial disease.My husband and I are terrified and our 4 yr old is traumatized beyond belief.Jonah went through all the same problems and surgeries and hospitilizations as many of you on this list.Beware.If this can happen ti\o us it can happen to any family with a mitochondrial child.PLEASE bring you child to a centre or specialist in mito diseases before this happens to you!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.We live in constant fear of the next setback.We never knew when Jonah was going to go downhill as it always happened so quick, it could be something as mundane as the flu anf it would land him in the ER in distress.He is one of two joys in our lives the other being our other son.He is the sweetest, happiest baby and is doing really well right now,aside from a respiratory prblem according the the foster parents.He still is at 22 pounds but that is still good.Please be careful everyone, it has shattered our family, thankfully we are a strong one so we will fight for Jonah until the end! >From: Hilandgang@... >Reply-To: Mitoonelist >To: mitoonelist >Subject: scary thought... >Date: Wed, 8 Sep 1999 02:31:01 EDT > >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 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 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...
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