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<blockquote data-quote="dreamer" data-source="post: 12954" data-attributes="member: 1697"><p>I keep re reading this....I keep trying to figure out how it relates to me. Or if it does. Maybe it doesn't. </p><p></p><p>I do know when I first began our journey into all of this kind of stuff....18 years ago.....there was a lot less innformation available to the docs, yes, that is very very true. </p><p>I was innocent, naive and trusting. </p><p>I believed our professionals, and trusted them. I did every single thing they told me to do. I was grateful for their professional knowledge. </p><p></p><p>But slowly things got worse instead of better. But when I complained, I was told things had to be getting worse because I could not be doing what I had been told to do, otherwise things would get better. </p><p>SO, I thought gosh maybe I misunderstood. ANd I confirmed and clarified instructions. ANd I was doing exactly as told. ANd nope, things were still getting worse. SO then I had to "prove" I was following orders correctly.....to in home people, and to state and county authrorities. </p><p>ANd still things got evenmore worse. ANd while the in home people and state and county authrorities kept me under a microscope, they made sure I did as told. and still things got worse. </p><p>I was accused of MUnchausen by proxy. I was accused of stealing my kids medications, nevermind eventually in home workers administered my kids medications directly. </p><p>Nevermind for approx 5 years I was hardly alone at all with my kids, had every kind of in home help imaginable. Overseeing every single breathe everyone of us in this family did. Things still continued to get worse. </p><p>By then I had gone thru nursing school, by then I was also working for the county and worked in an Dementia/ALzheimers unit. I started paying closer attention to various medications and reactions to medications etc. </p><p>By then I started talking to other people with loved ones also diagnosis'ed with mental illnesses. </p><p>When our school called 9-1-1 on our oldest before calling us, and crisis intervention said our psychiatrist would not respond to pages they put in from school I REALLY started to wonder. </p><p>When my dtr was inpatient in psychiatric hospital and her psychiatrist STILL refused calls...even from psychiatric hospital- I knew we had a MAJOR problem.</p><p></p><p>I began to make arrangements to change docs. I went to a univ hospital in city and found a new doctor, and set an appointment. when dtr was discharged from psychiatric hospital- I had a pile of letters from all the caregivers that had been in place up till that time. Ironically, while she was inpatient in psychiatric hospital, all her care providers had met and "successfully graduated her out of the system" </p><p>Yeah, OK. </p><p>Alas, her local psychiatrist called a month or so later to ask why we had not been calling for more appts. I said we have a new psychiatrist. Next thing we had CP at our door, our old psychiatrist called CPS and cited medicalnegligence. </p><p>Well, we did have a new psychiatrist and were able to provide cps with documentation. </p><p>Not long after our kids school decided to demand a docs note for something......and when the note came from a doctor in the city, the school called cps, too, also for medicalnegligence, saying gosh noone goes to the city for a doctor, thats 3 hours away. again we had to prove we really did have a doctor theree. </p><p></p><p>I did everything in my power to work with the old care providers. The psychiatrist, therapist, multitude of therapies, WRAP, SASS mentors, respite, etc etc. They were a package deal here. ANd I put my trust in them and worked hard to work WITH them. </p><p>In fairness to them I do now know they did not know. BUT they also did everything in their power to discredit me to protect their own egos. The y put my child in danger to cover their own behind. </p><p>I later found out they also manipulated files charts and records. </p><p></p><p>They never believed me when I said yes I am giving my child her ritalin exactly as Rx'ed. When at age 8 she began to try to cut her wrists they accused me of witholding her Paxil. When at 10 she did not sleep for 4 days, they accused me of not giving her her zoloft. They also suggested maybe she was using recreational drugs. </p><p>I found out from the records I later got, they assumed I was using recreational drugs, as well, and stealing her drugs, too. </p><p>I was not and never did do either.</p><p></p><p>I trusted our professionals. I believed in them. I tried so hard to work with them and to be a part of The Team. </p><p></p><p>I remember sitting in countless staffings where our "professionals" argued with each other. No, they were NOT discussions, they were not debates. </p><p>Sadly at that time, in our area, there was not anywhere else to get mentalhealth care locally. </p><p></p><p></p><p>SO when I first read this thread, I was not quite clear on what it was about. But I do want to make sure that parents do not just think they are doing someething wrong if things are not working out. If things are not working out it does not necessarily mean YOU were not a Team PLayer. It might mean your professionals aren't. </p><p></p><p>It is ok to disagree with a diagnosis, it is ok to disagree with a professional. Mental Health is still in it's infancy. Most of the treatments are new- that is-not have ben in place all that long. Heck, acknowledging things such as BiPolar (BP) in children is new in my childs lifetime in many geopgraphical areas. When she was 3 I said time and again, look, she IS bipolar, (EXTENSIVE history all over both sides of family tree) but alas, I was told time and time again, no children cannot be bipolar, you must be 16 or 18 to be bipolar. </p><p>Psychiatry is a "soft science" so far there are no concrete objective tests for things like ADD, ADHD, Bipolar, etc. diagnosis is based on observation. Sadly in all other science you need much more concrete tangible solid evidence. These illnesses and disorders are subject to interpretation. Interpretation can vary. </p><p>Many of the medications being used are relatively new. Most have not been tested in children, growing bodies, developing brains. </p><p>Many of the other therapies are also new- or new in use for kids. </p><p>SOme of the first kids who trialed these drugs and therapies are only just now coming into adulthood. </p><p>It is us who is setting precedant, us who are the Frontiersmen. </p><p>Yes the single most important quality to have in a psychiatrist is for that psychiatrist to actively and intently listen and hear us. Whether we like it or not we are the guinea pigs. and whether our docs will admit it or not, it is all still so much guesswork. </p><p></p><p>And yes I have been saying since I came here.....you are the expert upon which the psychiatrist needs to be able to trust to relay accurate observations. If your doctor does not want to heed your observations, you need to seek one who will.</p><p>As in any other profession, there are good and bad docs, therapists, social workers etc. They are after all, human beings, and can have the same flaws as the rest of us can have. But the single most important skill they have is to listen to us and our kids. If they do not LISTEN then how the heck do they even know what the problem is?</p></blockquote><p></p>
[QUOTE="dreamer, post: 12954, member: 1697"] I keep re reading this....I keep trying to figure out how it relates to me. Or if it does. Maybe it doesn't. I do know when I first began our journey into all of this kind of stuff....18 years ago.....there was a lot less innformation available to the docs, yes, that is very very true. I was innocent, naive and trusting. I believed our professionals, and trusted them. I did every single thing they told me to do. I was grateful for their professional knowledge. But slowly things got worse instead of better. But when I complained, I was told things had to be getting worse because I could not be doing what I had been told to do, otherwise things would get better. SO, I thought gosh maybe I misunderstood. ANd I confirmed and clarified instructions. ANd I was doing exactly as told. ANd nope, things were still getting worse. SO then I had to "prove" I was following orders correctly.....to in home people, and to state and county authrorities. ANd still things got evenmore worse. ANd while the in home people and state and county authrorities kept me under a microscope, they made sure I did as told. and still things got worse. I was accused of MUnchausen by proxy. I was accused of stealing my kids medications, nevermind eventually in home workers administered my kids medications directly. Nevermind for approx 5 years I was hardly alone at all with my kids, had every kind of in home help imaginable. Overseeing every single breathe everyone of us in this family did. Things still continued to get worse. By then I had gone thru nursing school, by then I was also working for the county and worked in an Dementia/ALzheimers unit. I started paying closer attention to various medications and reactions to medications etc. By then I started talking to other people with loved ones also diagnosis'ed with mental illnesses. When our school called 9-1-1 on our oldest before calling us, and crisis intervention said our psychiatrist would not respond to pages they put in from school I REALLY started to wonder. When my dtr was inpatient in psychiatric hospital and her psychiatrist STILL refused calls...even from psychiatric hospital- I knew we had a MAJOR problem. I began to make arrangements to change docs. I went to a univ hospital in city and found a new doctor, and set an appointment. when dtr was discharged from psychiatric hospital- I had a pile of letters from all the caregivers that had been in place up till that time. Ironically, while she was inpatient in psychiatric hospital, all her care providers had met and "successfully graduated her out of the system" Yeah, OK. Alas, her local psychiatrist called a month or so later to ask why we had not been calling for more appts. I said we have a new psychiatrist. Next thing we had CP at our door, our old psychiatrist called CPS and cited medicalnegligence. Well, we did have a new psychiatrist and were able to provide cps with documentation. Not long after our kids school decided to demand a docs note for something......and when the note came from a doctor in the city, the school called cps, too, also for medicalnegligence, saying gosh noone goes to the city for a doctor, thats 3 hours away. again we had to prove we really did have a doctor theree. I did everything in my power to work with the old care providers. The psychiatrist, therapist, multitude of therapies, WRAP, SASS mentors, respite, etc etc. They were a package deal here. ANd I put my trust in them and worked hard to work WITH them. In fairness to them I do now know they did not know. BUT they also did everything in their power to discredit me to protect their own egos. The y put my child in danger to cover their own behind. I later found out they also manipulated files charts and records. They never believed me when I said yes I am giving my child her ritalin exactly as Rx'ed. When at age 8 she began to try to cut her wrists they accused me of witholding her Paxil. When at 10 she did not sleep for 4 days, they accused me of not giving her her zoloft. They also suggested maybe she was using recreational drugs. I found out from the records I later got, they assumed I was using recreational drugs, as well, and stealing her drugs, too. I was not and never did do either. I trusted our professionals. I believed in them. I tried so hard to work with them and to be a part of The Team. I remember sitting in countless staffings where our "professionals" argued with each other. No, they were NOT discussions, they were not debates. Sadly at that time, in our area, there was not anywhere else to get mentalhealth care locally. SO when I first read this thread, I was not quite clear on what it was about. But I do want to make sure that parents do not just think they are doing someething wrong if things are not working out. If things are not working out it does not necessarily mean YOU were not a Team PLayer. It might mean your professionals aren't. It is ok to disagree with a diagnosis, it is ok to disagree with a professional. Mental Health is still in it's infancy. Most of the treatments are new- that is-not have ben in place all that long. Heck, acknowledging things such as BiPolar (BP) in children is new in my childs lifetime in many geopgraphical areas. When she was 3 I said time and again, look, she IS bipolar, (EXTENSIVE history all over both sides of family tree) but alas, I was told time and time again, no children cannot be bipolar, you must be 16 or 18 to be bipolar. Psychiatry is a "soft science" so far there are no concrete objective tests for things like ADD, ADHD, Bipolar, etc. diagnosis is based on observation. Sadly in all other science you need much more concrete tangible solid evidence. These illnesses and disorders are subject to interpretation. Interpretation can vary. Many of the medications being used are relatively new. Most have not been tested in children, growing bodies, developing brains. Many of the other therapies are also new- or new in use for kids. SOme of the first kids who trialed these drugs and therapies are only just now coming into adulthood. It is us who is setting precedant, us who are the Frontiersmen. Yes the single most important quality to have in a psychiatrist is for that psychiatrist to actively and intently listen and hear us. Whether we like it or not we are the guinea pigs. and whether our docs will admit it or not, it is all still so much guesswork. And yes I have been saying since I came here.....you are the expert upon which the psychiatrist needs to be able to trust to relay accurate observations. If your doctor does not want to heed your observations, you need to seek one who will. As in any other profession, there are good and bad docs, therapists, social workers etc. They are after all, human beings, and can have the same flaws as the rest of us can have. But the single most important skill they have is to listen to us and our kids. If they do not LISTEN then how the heck do they even know what the problem is? [/QUOTE]
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