Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 she had one, and she appeared to "look" healthy, which was a joke in itself because she was suffering from failure to thrive, and decided that I must be the cause. This "doctor" had me investigated for Munchausen by Proxy. This had to be the worst experience of my life! I was being accused of purposefully hurting my child when all I had done for the past 8 months, was work myself to death to make sure she had the best care she could get, and try to find out what was wrong with her. I was tricked out of her room. They told me they needed me to come and sign a paper, and a nurse came in and took her from the room and away. I was then escorted to a room and was grilled over and over about each and every time I had had to call the paramedics and or do CPR on her, all of her hospital stays, and it went on and on. The stress I was put under was incredible, I was treated like a criminal. My husband was allowed to be with her, but I was not allowed to be near her. This arrogant Intern "doctor" would not back down for anything and it took not only my current pediatrician, who had been her pediatrician from birth, but the Geneticist at Children's Los Angeles to clear up the accusations. Even though it had been proven that I had been falsely accused, by law, I had no recourse on the doctor who falsely accused me. They do not have to have evidence to accuse, just a suspicion, nor was I ever so much as offered an apology by the doctor or the hospital. I have been left with scars still to this day from this mans carelessness and flat arrogance. I was afraid to take her to get help when she needed it for fear of another false accusation, and waited far longer than I should have or would have waited prior to the accusations. To this day I am very sensitive about doctors who don't know anything in ER rooms who ask questions. I always wonder what they may be thinking and is it going to happen again. I carried a letter with me everywhere I went from the geneticist explaining her illness after that, and still do to this day. At nine months, the geneticists doctor figured out that she had what he diagnosed her with at that time to be MCAD-and then was changed to Glutaric Academia Type II at 15 months or so. Both Mitochondrial Diagnosis, the rare disease he had told us he feared she had. I will never forget the phone call we got telling us the results were in and the doctor wanted to speak to us face to face. You know when you hear that, that nothing good is going to be said. Even though they gave her the diagnosis, she had several symptoms that fit other things as well. She had "Like" symptoms of several things. I remember carrying her from the doctors office completely stunned, scared, angry and just in flat shock! How could our beautiful little girl be so ill? It just didn't make any sense to us at all at that time. I went home and began researching absolutely everything I could find, which was not much on the 2 diagnosis'. In between the tears, I had overwhelming bouts of fear and anger. By the time she was a little over a year old we were forced to file a medical bankruptcy as we were in hock over $250,000 and we "had" medical insurance! About this time I became pregnant with twin boys which at just a little over 5 months I miscarried. They were severely deformed and I was told were not viable even if I had carried them to term. We were counseled that it was a one in four possibility of having another child with the problems that our daughter had and the twin boys were probably a coincidence of circumstances, and there was no reason to not try again. However, it was in their experience that couples facing what we were facing almost always divorce within 2 years of diagnosis due to the demanding life style and stress and financial burden of caring for an ill child. We decided that was not going to be us, although through the years of such high stress, our marriage has been put to the test for sure! We are about to celebrate or 15th wedding anniversary. Our daughter continued to be in and out of the hospital, and I became pregnant again. I was scared to death! My pregnancy was different then the one with my daughter, although I still experienced similar issues, they didn't seem to be as severe. At 33 weeks our son was delivered via C-Section, I was having horrible blood pressure problems and had passed out in the OBGYN's office at my check up, I was sent straight to the hospital and my husband was told the baby had to be delivered for my safety. At birth, unlike his sister, he did not have a heart issue and was a good weight. However, as he grew we began to notice little signs of trouble, repetitive behaviors, violent outbursts, seizure like activity. He lived for the movement of his swing. As long as he was in his swing, he was a happy baby. When I pointed the behaviors out to the doctors, I was told that just because his sister was sick, didn't mean he would be too, that he was just fine and to relax. I was terrified of another Munchausen accusation, so I was not as aggressive as I should have been for him. We were told he was probably acting out from my being away at the hospital so much with his sister. My concerns were virtually ignored by both the doctors as well as some members of my family, until one day we were at the geneticists office for an appointment with his sister and he had an episode in front of the doctor. This doctor happen to be one of the main Mito doctors that the previous geneticist had referred us to. I will never forget his looking at me and saying," Is this what you have been talking about? Oh! We have a problem." I wanted to shout, " Houston we have a landing!!!!!!" Finally someone saw it, and I wasn't crazy! My son was almost 3 years old at that point. Our daughter had been getting pneumonia on a regular basis and I was constantly in the hospital with her. We were told that if we did not get her to a climate away from the ocean air, we lived in an area that was within 25 minutes drive to the ocean and our air was damp a good portion of the time, we would loose her due to a secondary issue of lung failure from all the pneumonia. So I began the search for a place that we could afford to live in and I could get a teaching job at, and was not going to be too far of a drive to the Children's Hospital we seemed to be living at. We ended up in a dessert/mountain area which only added about 40 minutes or so to our drive to the hospital. Our daughter has only had 2 more bouts with pneumonia since we moved out here a little over 10 years ago. Because my husband had to work nights so that there was always a parent available to the children, he had been in and out of jobs, working night security for places, loading trucks at warehouses ect. I was our main stay financially which was very stressful for me trying to deal with 2 ill children and keep a job as well, I knew that I couldn't give up because I was the one carrying the insurance for the children. If I gave up, what would happen to them? My husband went through severe depression and struggled with knowing that both the children were sick. He shut down basically with helping with their medical issues. He refused to do any of the medical stuff, hospital stays doctor appointments ect. He would give them their medication and deal with the at home stuff if he really had no choice, but he would not deal with the clinical part to them. I can remember sitting in the hospital with my daughter and her asking why daddy wouldn't come and see her, had she been bad. Trying to explain to a 5 year old that her dad was having some problems but he loved her very much even though he hadn't come to the hospital, was like trying to tell people Barney the dinosaur's voice wasn't irritating! I was so mad at him for doing this to his daughter, but the madder I got the further he pulled away. He told me that I did not understand what it was like to be the dad. True as I was the Mom, who had been sitting in the hospital with a very sick kid for the last 2 weeks! He said that he was supposed to protect them and he could fix broken doll heads and wheels that came off of trucks, but he couldn't fix them, and there wasn't a darn thing he could do about it! It was the first time in almost 6 years that he had verbalized how he felt about the children's illness. Of course my attitude was "dude get over it " and was very angry with him for taking the luxury of being able to step back and say "you handle it" but at least he had finally said what his problem was. He began to see a counselor at this time and slowly work through his depression. It was very difficult for me to be his "cheerleader," through all of this as I was so hurt and angry with him for in my mind, allowing himself to feel sorry for himself. Had I done the same, my family would have fallen apart. I was his wife and didn't want to be his mother. Once the genetic doctor saw what had been going on with our son, the testing began on him. Although he was showing signs, his were considered to be much less than that of his sister,. I was very frustrated with this. Although they were different from his sister, I did not feel in anyway they were less. In fact his issues required far more of my time as far as dealing with the fits of rage and behavior issues. I was not in the hospital as much with him as his sister, but it required far more "work" to keep him healthy on my part. I can remember praying for someone to just shoot me. I was working full time teaching, taking care of 2 very ill children, spending my breaks at work on the phone with the insurance companies trying to get the things that had been ordered by their doctors covered, coming home to a house totally out of control and laundry piled to the ceiling, and a husband dealing with depression. I think the only thing that kept me going was the fact that I knew if I stopped I would never get up again, and my children's lives depended on me and only me. At one point I even highly considered making my daughter a ward of the state and applying to be her foster Mom so I would get paid to care for her and I could stay home and not "work" and just focus on taking care of the kids and their medical issues, and she would then get insurance through the state. The medical bills were so high at this point again, we were struggling to keep a roof over our heads and food on the table. I had applied for state help, however I was told that because I worked and was married, we did not qualify for any form of governmental help. I was too afraid to make our daughter a ward of the state because with my luck, I would have been denied being qualified to care for her and loose her to someone else. I was not going to give up my child. We were told that because our son was not showing signs at birth his prognosis was much better than his sisters, however I was still very concerned because I knew he had been showing signs since birth, but no one would listen to me. Our oldest Daughter had been very ill with the apnea's and Aspiration Pneumonia, and we had been in and out of the hospital many, many times. One day she was having a really rough time and the home nurse decided that she was no longer comfortable having her at home, so we set out for our Children's Hospital 3 hours away, we had had her at a pulmonary appointment just that very morning at the Children's Hospital. When we got there, we went straight to the ER room because the pulmonary on call had directed us to do so. It was then that I was accused of lying to them about her having just been there and just had chest x-rays that very morning. Even though I had the home nurse with me, the ER Doc accused me of lying about trying to get her help and said I was playing a dangerous game with my child, because he needed an x-ray to see what was going on, and they could not find any x-ray of her that had been taken that morning. If she in fact Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 OK, just looking at recent posts I seen your pars now! Shirl > she had one, and she appeared to " look " healthy, which was a joke in > itself because she was suffering from failure to thrive, and decided > that I must be the cause. This " doctor " had me investigated for > Munchausen by Proxy. This had to be the worst experience of my life! > I was being accused of purposefully hurting my child when all I had > done for the past 8 months, was work myself to death to make sure she > had the best care she could get, and try to find out what was wrong > with her. I was tricked out of her room. They told me they needed me > to come and sign a paper, and a nurse came in and took her from the > room and away. I was then escorted to a room and was grilled over and > over about each and every time I had had to call the paramedics and or > do CPR on her, all of her hospital stays, and it went on and on. The > stress I was put under was incredible, I was treated like a criminal. > My husband was allowed to be with her, but I was not allowed to be > near her. This arrogant Intern " doctor " would not back down for > anything and it took not only my current pediatrician, who had been > her pediatrician from birth, but the Geneticist at Children's Los > Angeles to clear up the accusations. Even though it had been proven > that I had been falsely accused, by law, I had no recourse on the > doctor who falsely accused me. They do not have to have evidence to > accuse, just a suspicion, nor was I ever so much as offered an apology > by the doctor or the hospital. I have been left with scars still to > this day from this mans carelessness and flat arrogance. I was afraid > to take her to get help when she needed it for fear of another false > accusation, and waited far longer than I should have or would have > waited prior to the accusations. To this day I am very sensitive about > doctors who don't know anything in ER rooms who ask questions. I > always wonder what they may be thinking and is it going to happen > again. I carried a letter with me everywhere I went from the > geneticist explaining her illness after that, and still do to this > day. > At nine months, the geneticists doctor figured out that she had > what he diagnosed her with at that time to be MCAD-and then was > changed to Glutaric Academia Type II at 15 months or so. Both > Mitochondrial Diagnosis, the rare disease he had told us he feared she > had. I will never forget the phone call we got telling us the results > were in and the doctor wanted to speak to us face to face. You know > when you hear that, that nothing good is going to be said. Even though > they gave her the diagnosis, she had several symptoms that fit other > things as well. She had " Like " symptoms of several things. I > remember carrying her from the doctors office completely stunned, > scared, angry and just in flat shock! How could our beautiful little > girl be so ill? It just didn't make any sense to us at all at that > time. I went home and began researching absolutely everything I could > find, which was not much on the 2 diagnosis'. In between the tears, I > had overwhelming bouts of fear and anger. By the time she was a > little over a year old we were forced to file a medical bankruptcy as > we were in hock over $250,000 and we " had " medical insurance! > About this time I became pregnant with twin boys which at just a > little over 5 months I miscarried. They were severely deformed and I > was told were not viable even if I had carried them to term. We were > counseled that it was a one in four possibility of having another > child with the problems that our daughter had and the twin boys were > probably a coincidence of circumstances, and there was no reason to > not try again. However, it was in their experience that couples facing > what we were facing almost always divorce within 2 years of diagnosis > due to the demanding life style and stress and financial burden of > caring for an ill child. We decided that was not going to be us, > although through the years of such high stress, our marriage has been > put to the test for sure! We are about to celebrate or 15th wedding > anniversary. > Our daughter continued to be in and out of the hospital, and I > became pregnant again. I was scared to death! My pregnancy was > different then the one with my daughter, although I still experienced > similar issues, they didn't seem to be as severe. At 33 weeks our son > was delivered via C-Section, I was having horrible blood pressure > problems and had passed out in the OBGYN's office at my check up, I > was sent straight to the hospital and my husband was told the baby had > to be delivered for my safety. At birth, unlike his sister, he did not > have a heart issue and was a good weight. However, as he grew we > began to notice little signs of trouble, repetitive behaviors, violent > outbursts, seizure like activity. He lived for the movement of his > swing. As long as he was in his swing, he was a happy baby. When I > pointed the behaviors out to the doctors, I was told that just because > his sister was sick, didn't mean he would be too, that he was just > fine and to relax. I was terrified of another Munchausen accusation, > so I was not as aggressive as I should have been for him. We were told > he was probably acting out from my being away at the hospital so much > with his sister. My concerns were virtually ignored by both the > doctors as well as some members of my family, until one day we were at > the geneticists office for an appointment with his sister and he had > an episode in front of the doctor. This doctor happen to be one of the > main Mito doctors that the previous geneticist had referred us to. I > will never forget his looking at me and saying, " Is this what you have > been talking about? Oh! We have a problem. " I wanted to shout, " > Houston we have a landing!!!!!! " Finally someone saw it, and I wasn't > crazy! My son was almost 3 years old at that point. > > Our daughter had been getting pneumonia on a regular > basis and I was constantly in the hospital with her. We were told > that if we did not get her to a climate away from the ocean air, we > lived in an area that was within 25 minutes drive to the ocean and our > air was damp a good portion of the time, we would loose her due to a > secondary issue of lung failure from all the pneumonia. So I began > the search for a place that we could afford to live in and I could get > a teaching job at, and was not going to be too far of a drive to the > Children's Hospital we seemed to be living at. We ended up in a > dessert/mountain area which only added about 40 minutes or so to our > drive to the hospital. Our daughter has only had 2 more bouts with > pneumonia since we moved out here a little over 10 years ago. Because > my husband had to work nights so that there was always a parent > available to the children, he had been in and out of jobs, working > night security for places, loading trucks at warehouses ect. I was > our main stay financially which was very stressful for me trying to > deal with 2 ill children and keep a job as well, I knew that I > couldn't give up because I was the one carrying the insurance for the > children. If I gave up, what would happen to them? My husband went > through severe depression and struggled with knowing that both the > children were sick. He shut down basically with helping with their > medical issues. He refused to do any of the medical stuff, hospital > stays doctor appointments ect. He would give them their medication > and deal with the at home stuff if he really had no choice, but he > would not deal with the clinical part to them. I can remember sitting > in the hospital with my daughter and her asking why daddy wouldn't > come and see her, had she been bad. Trying to explain to a 5 year old > that her dad was having some problems but he loved her very much even > though he hadn't come to the hospital, was like trying to tell people > Barney the dinosaur's voice wasn't irritating! I was so mad at him for > doing this to his daughter, but the madder I got the further he pulled > away. He told me that I did not understand what it was like to be the > dad. True as I was the Mom, who had been sitting in the hospital with > a very sick kid for the last 2 weeks! He said that he was supposed to > protect them and he could fix broken doll heads and wheels that came > off of trucks, but he couldn't fix them, and there wasn't a darn thing > he could do about it! It was the first time in almost 6 years that he > had verbalized how he felt about the children's illness. Of course my > attitude was " dude get over it " and was very angry with him for > taking the luxury of being able to step back and say " you handle it " > but at least he had finally said what his problem was. He began to see > a counselor at this time and slowly work through his depression. It > was very difficult for me to be his " cheerleader, " through all of this > as I was so hurt and angry with him for in my mind, allowing himself > to feel sorry for himself. Had I done the same, my family would have > fallen apart. I was his wife and didn't want to be his mother. > > Once the genetic doctor saw what had been going on with our > son, the testing began on him. Although he was showing signs, his were > considered to be much less than that of his sister,. I was very > frustrated with this. Although they were different from his sister, I > did not feel in anyway they were less. In fact his issues required far > more of my time as far as dealing with the fits of rage and behavior > issues. I was not in the hospital as much with him as his sister, but > it required far more " work " to keep him healthy on my part. I can > remember praying for someone to just shoot me. I was working full > time teaching, taking care of 2 very ill children, spending my breaks > at work on the phone with the insurance companies trying to get the > things that had been ordered by their doctors covered, coming home to > a house totally out of control and laundry piled to the ceiling, and a > husband dealing with depression. I think the only thing that kept me > going was the fact that I knew if I stopped I would never get up > again, and my children's lives depended on me and only me. At one > point I even highly considered making my daughter a ward of the state > and applying to be her foster Mom so I would get paid to care for her > and I could stay home and not " work " and just focus on taking care of > the kids and their medical issues, and she would then get insurance > through the state. The medical bills were so high at this point again, > we were struggling to keep a roof over our heads and food on the > table. I had applied for state help, however I was told that because I > worked and was married, we did not qualify for any form of > governmental help. I was too afraid to make our daughter a ward of the > state because with my luck, I would have been denied being qualified > to care for her and loose her to someone else. I was not going to > give up my child. We were told that because our son was not showing > signs at birth his prognosis was much better than his sisters, however > I was still very concerned because I knew he had been showing signs > since birth, but no one would listen to me. > Our oldest Daughter had been very ill with the apnea's and > Aspiration Pneumonia, and we had been in and out of the hospital many, > many times. One day she was having a really rough time and the home > nurse decided that she was no longer comfortable having her at home, > so we set out for our Children's Hospital 3 hours away, we had had her > at a pulmonary appointment just that very morning at the Children's > Hospital. When we got there, we went straight to the ER room because > the pulmonary on call had directed us to do so. It was then that I > was accused of lying to them about her having just been there and just > had chest x-rays that very morning. Even though I had the home nurse > with me, the ER Doc accused me of lying about trying to get her help > and said I was playing a dangerous game with my child, because he > needed an x-ray to see what was going on, and they could not find any > x-ray of her that had been taken that morning. If she in fact > > Please contact mito-owner with any problems or > questions. > > > > > Quote Link to comment Share on other sites More sharing options...
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