Guest guest Posted March 22, 2006 Report Posted March 22, 2006 Hi Chantelle, The mental health system can certainly be a pain and make things worse. Is the medicine they gave you Celexa? That is an antidepressant. Three out of 87 kids with CHARGE were on it in my last study. The Post Traumatic Stress Disorder and the OCD are both things I believe most people with CHARGE probably have to some extent. The Borderline Personality Disorder is fairly complicated. People with BPD have issues with being abandoned by other people that affects how they feel about themselves and gets in the way of forming healthier interpersonal relationships. The diagnosis does not take into account that the person may in fact be socially isolated due to a genetic syndrome. Let me say something about psychiatric diagnosis. It is simply a means of categorizing the kinds of difficulties that people with mental health problems have. The categories are established by consensus of clinical researchers. They review all of the research they can find on a particular pattern of behavior, and then sit around a table and decide what to call it and how to make the classification. While it is overall a good system because it allows psychologists and psychiatrists to communicate with each other about patients and gives some clues for treatment, it is not a perfect system, and reasonable people can argue about whether a diagnosis fits a particular case. The diagnosis is not a substitute for understanding the patient and the patient's life circumstances. Even a diagnosis of CHARGE does not tell you a lot of things. Chantelle, I think the Celexa is probably a good idea. I am trying again to see what I can learn about mental health practitioners in your area. I'll communicate privately with you about that. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 22, 2006 Report Posted March 22, 2006 Tim, not everything somoene has is to do with CHARGE u must know that? Sorry, im sure u didnt mean xactly that, but people have otehr things in their lives to besdies charge that affect them, maybe charge maes you more prone to things who knows, > > Hi Chantelle, > > > > The mental health system can certainly be a pain and make things worse. > > > > Is the medicine they gave you Celexa? That is an antidepressant. Three > out of 87 kids with CHARGE were on it in my last study. > > > > The Post Traumatic Stress Disorder and the OCD are both things I believe > most people with CHARGE probably have to some extent. The Borderline > Personality Disorder is fairly complicated. People with BPD have issues > with being abandoned by other people that affects how they feel about > themselves and gets in the way of forming healthier interpersonal > relationships. The diagnosis does not take into account that the person > may in fact be socially isolated due to a genetic syndrome. > > > > Let me say something about psychiatric diagnosis. It is simply a means > of categorizing the kinds of difficulties that people with mental health > problems have. The categories are established by consensus of clinical > researchers. They review all of the research they can find on a > particular pattern of behavior, and then sit around a table and decide > what to call it and how to make the classification. While it is overall > a good system because it allows psychologists and psychiatrists to > communicate with each other about patients and gives some clues for > treatment, it is not a perfect system, and reasonable people can argue > about whether a diagnosis fits a particular case. The diagnosis is not > a substitute for understanding the patient and the patient's life > circumstances. Even a diagnosis of CHARGE does not tell you a lot of > things. > > > > Chantelle, I think the Celexa is probably a good idea. I am trying > again to see what I can learn about mental health practitioners in your > area. I'll communicate privately with you about that. > > > > Tim > > > > S. Hartshorne, Ph.D. > > School Psychology Program Director > > Professor of Psychology > > Central Michigan University > > Mount Pleasant, MI 48859 > > phone > > fax > > tim.hartshorne@... > > > > > > Quote
Guest guest Posted March 22, 2006 Report Posted March 22, 2006 Tim, not everything somoene has is to do with CHARGE u must know that? Sorry, im sure u didnt mean xactly that, but people have otehr things in their lives to besdies charge that affect them, maybe charge maes you more prone to things who knows, > > Hi Chantelle, > > > > The mental health system can certainly be a pain and make things worse. > > > > Is the medicine they gave you Celexa? That is an antidepressant. Three > out of 87 kids with CHARGE were on it in my last study. > > > > The Post Traumatic Stress Disorder and the OCD are both things I believe > most people with CHARGE probably have to some extent. The Borderline > Personality Disorder is fairly complicated. People with BPD have issues > with being abandoned by other people that affects how they feel about > themselves and gets in the way of forming healthier interpersonal > relationships. The diagnosis does not take into account that the person > may in fact be socially isolated due to a genetic syndrome. > > > > Let me say something about psychiatric diagnosis. It is simply a means > of categorizing the kinds of difficulties that people with mental health > problems have. The categories are established by consensus of clinical > researchers. They review all of the research they can find on a > particular pattern of behavior, and then sit around a table and decide > what to call it and how to make the classification. While it is overall > a good system because it allows psychologists and psychiatrists to > communicate with each other about patients and gives some clues for > treatment, it is not a perfect system, and reasonable people can argue > about whether a diagnosis fits a particular case. The diagnosis is not > a substitute for understanding the patient and the patient's life > circumstances. Even a diagnosis of CHARGE does not tell you a lot of > things. > > > > Chantelle, I think the Celexa is probably a good idea. I am trying > again to see what I can learn about mental health practitioners in your > area. I'll communicate privately with you about that. > > > > Tim > > > > S. Hartshorne, Ph.D. > > School Psychology Program Director > > Professor of Psychology > > Central Michigan University > > Mount Pleasant, MI 48859 > > phone > > fax > > tim.hartshorne@... > > > > > > Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Tim, I tried to write to Chantelle but your post is more advice and comforting than most of us could do. Patty is on Risperdal for her Tourettes. She's also had been given Celexa within the last year for anxiety. Within three weeks from starting it was as though she was a flower opening once again to the world. For her it was one of those meds that was able to change her life. Also with it we have been able to decrease the Risperdal but have not been able to totally take it away. Of course meds are our last option but is what allows her to live in this world calmly and able to face what life throws at her. I do have a warning about one med called Strattera which they tried for her ADD. It totally destroyed her for a bit. That was horrible for Patty to live through. I talk about Patty, meds, therapies and stuff to try to help others. On paper she sounds like she has these " problems " . Actually her behaviors are hard to realize they are behaviors unless you know the healthy Patty. That's where many don't get it. So they can be missed diagnosed, etc. That then causes stress, that then makes things go wrong. Tim, it is so complicated. Chantelle needs someone who is aware of who and what she truly is and then positively support her. I also get concerned sometimes when parents hear what the diagnosis or what the meds are for that they deny or run from them. Some meds balances out what needs to be. But that has to be done in conjunction with therapy. Because you live the life that you do, and are a CHARGE specialist, you understand the words. Mental health, psychiatric disorders, anxiety, depression are words that scare people. But like you said, they are terms to be used to understand what to do for the person. But I also get concerned because some meds really interact differently with our loved ones who have CHARGE. Our children need to be monitored closely by those who understand the implications. I also always live the life of seeing and questioning Nature vs. Nurture. I for one think Patty is one of the most stable persons I have ever met. I could not live as sure as myself, as happy with myself, as strong as she is if I had to deal with all that she does. How can anyone ever argue the post traumatic stress issue? I also see that Patty is a person who is incredibly self confident (too self confident for her own good sometimes) and I'd never take that away from her. I see the same in almost all the adults who have CHARGE. That's the incredible part but I think that too must be learned. There are some sad but true things in this world that is an underlying reason for many psychiatric issues. I am seeing this with what goes on for/with Patty. There's also the experiences that she lacks. Your statement of " The diagnosis does not take into account that the person may in fact be socially isolated due to a genetic syndrome " is one of the most profound here at this house. I can't describe how hard it is to see Patty's life as being isolated not because of her wishes or desires but because of-----your statement. Her genetic syndrome is CHARGE. Oh do you have to teach! I also am going to copy and past yet another one of your statements. Of course it has to do with mental health but it also can be substituted for everything that has to do with CHARGE. " " The diagnosis is not a substitute for understanding the patient and the patient's life circumstances. Even a diagnosis of CHARGE does not tell you a lot of things. " Thanks for that one! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Tim, I tried to write to Chantelle but your post is more advice and comforting than most of us could do. Patty is on Risperdal for her Tourettes. She's also had been given Celexa within the last year for anxiety. Within three weeks from starting it was as though she was a flower opening once again to the world. For her it was one of those meds that was able to change her life. Also with it we have been able to decrease the Risperdal but have not been able to totally take it away. Of course meds are our last option but is what allows her to live in this world calmly and able to face what life throws at her. I do have a warning about one med called Strattera which they tried for her ADD. It totally destroyed her for a bit. That was horrible for Patty to live through. I talk about Patty, meds, therapies and stuff to try to help others. On paper she sounds like she has these " problems " . Actually her behaviors are hard to realize they are behaviors unless you know the healthy Patty. That's where many don't get it. So they can be missed diagnosed, etc. That then causes stress, that then makes things go wrong. Tim, it is so complicated. Chantelle needs someone who is aware of who and what she truly is and then positively support her. I also get concerned sometimes when parents hear what the diagnosis or what the meds are for that they deny or run from them. Some meds balances out what needs to be. But that has to be done in conjunction with therapy. Because you live the life that you do, and are a CHARGE specialist, you understand the words. Mental health, psychiatric disorders, anxiety, depression are words that scare people. But like you said, they are terms to be used to understand what to do for the person. But I also get concerned because some meds really interact differently with our loved ones who have CHARGE. Our children need to be monitored closely by those who understand the implications. I also always live the life of seeing and questioning Nature vs. Nurture. I for one think Patty is one of the most stable persons I have ever met. I could not live as sure as myself, as happy with myself, as strong as she is if I had to deal with all that she does. How can anyone ever argue the post traumatic stress issue? I also see that Patty is a person who is incredibly self confident (too self confident for her own good sometimes) and I'd never take that away from her. I see the same in almost all the adults who have CHARGE. That's the incredible part but I think that too must be learned. There are some sad but true things in this world that is an underlying reason for many psychiatric issues. I am seeing this with what goes on for/with Patty. There's also the experiences that she lacks. Your statement of " The diagnosis does not take into account that the person may in fact be socially isolated due to a genetic syndrome " is one of the most profound here at this house. I can't describe how hard it is to see Patty's life as being isolated not because of her wishes or desires but because of-----your statement. Her genetic syndrome is CHARGE. Oh do you have to teach! I also am going to copy and past yet another one of your statements. Of course it has to do with mental health but it also can be substituted for everything that has to do with CHARGE. " " The diagnosis is not a substitute for understanding the patient and the patient's life circumstances. Even a diagnosis of CHARGE does not tell you a lot of things. " Thanks for that one! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Hey i want to start by saying thanks for the advice and stuff. Its usefull for me to know all this. I just want to stress that i am 100 percent sure MOST of my dx is based on life experiences that are seperate to charge syndrome. I can assure you what happend to me in grade 7 and grade 8 were what made me very socialy issolated. Not the chage. Tim, id apreciate it more if you would understand that it is these incidents and not charge that give me the dx i got. I would say the ocd yes thats charge. Maby a small extent ppts with operatons and such but i think what happend in grade 7 & 8 would make anyone socialy issolated and give anyone ptss! Maby charge just makes it harder for me to learn to move on. Also what happend to me at age 6 (im not sure the exact age) I dont want to go into detail but if you knew tim, you wouldnt be saying charge is what caused my problems. I know your a big supporter of charge being the reason we have behavioural issues and i dont want to be offencive or anything but i really do want to stress that we have had other things in our lives that affect us other then charge. Anyways tim, take care and I will talk more later, i gotta get to work. Chantelle Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Hey i want to start by saying thanks for the advice and stuff. Its usefull for me to know all this. I just want to stress that i am 100 percent sure MOST of my dx is based on life experiences that are seperate to charge syndrome. I can assure you what happend to me in grade 7 and grade 8 were what made me very socialy issolated. Not the chage. Tim, id apreciate it more if you would understand that it is these incidents and not charge that give me the dx i got. I would say the ocd yes thats charge. Maby a small extent ppts with operatons and such but i think what happend in grade 7 & 8 would make anyone socialy issolated and give anyone ptss! Maby charge just makes it harder for me to learn to move on. Also what happend to me at age 6 (im not sure the exact age) I dont want to go into detail but if you knew tim, you wouldnt be saying charge is what caused my problems. I know your a big supporter of charge being the reason we have behavioural issues and i dont want to be offencive or anything but i really do want to stress that we have had other things in our lives that affect us other then charge. Anyways tim, take care and I will talk more later, i gotta get to work. Chantelle Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Hi Belinda, You are completely correct that not everything a person has is related to CHARGE. Good point. If a person is being treated for something, I do think it is a good idea to keep in mind that the person has CHARGE. That's like my son and his asthma. When he had the flu we had to keep in mind his asthma and how that might affect the illness and his treatment, and also, like you said about CHARGE, maybe his asthma makes him more prone to respiratory illnesses. See you in a few months! Tim (father to , Seth, , Josh, , , ) S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Hi Chantelle, You are absolutely right that those life experiences you had probably caused the PTSD. PTSD cannot be caused by CHARGE. What I meant to say is that I believe a lot of kids with CHARGE have a lot of stress experiences that might be result in PTSD. There is new research that suggests that early childhood experiences of pain can cause PTSD in children. I think all of the surgeries that has gone through probably have resulted in some PTSD. I think this kind of stress probably makes things like OCD worse. It probably also makes the sleep problems that seem common in CHARGE worse. But the thing we all have to keep in mind is that having CHARGE is only part of who you are. You are a person first, and in particular you are a person everyone on this list values and appreciates very much; and you also happen to have CHARGE. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 23, 2006 Report Posted March 23, 2006 Hi Chantelle, You are absolutely right that those life experiences you had probably caused the PTSD. PTSD cannot be caused by CHARGE. What I meant to say is that I believe a lot of kids with CHARGE have a lot of stress experiences that might be result in PTSD. There is new research that suggests that early childhood experiences of pain can cause PTSD in children. I think all of the surgeries that has gone through probably have resulted in some PTSD. I think this kind of stress probably makes things like OCD worse. It probably also makes the sleep problems that seem common in CHARGE worse. But the thing we all have to keep in mind is that having CHARGE is only part of who you are. You are a person first, and in particular you are a person everyone on this list values and appreciates very much; and you also happen to have CHARGE. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 Chantelle, I just have to say that I am impressed with your ability to look at your past and present, to look within yourself and to put it all together to develop a plan for your stability and your future. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 Chantelle, I just have to say that I am impressed with your ability to look at your past and present, to look within yourself and to put it all together to develop a plan for your stability and your future. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote
Guest guest Posted March 24, 2006 Report Posted March 24, 2006 Chantelle, I just have to say that I am impressed with your ability to look at your past and present, to look within yourself and to put it all together to develop a plan for your stability and your future. Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to Quote
Guest guest Posted March 25, 2006 Report Posted March 25, 2006 Tim, I just read this message. Once again, nice! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to In a message dated 3/23/2006 11:41:49 AM Eastern Standard Time, Tim.hartshorne@... writes: Hi Chantelle, You are absolutely right that those life experiences you had probably caused the PTSD. PTSD cannot be caused by CHARGE. What I meant to say is that I believe a lot of kids with CHARGE have a lot of stress experiences that might be result in PTSD. There is new research that suggests that early childhood experiences of pain can cause PTSD in children. I think all of the surgeries that has gone through probably have resulted in some PTSD. I think this kind of stress probably makes things like OCD worse. It probably also makes the sleep problems that seem common in CHARGE worse. But the thing we all have to keep in mind is that having CHARGE is only part of who you are. You are a person first, and in particular you are a person everyone on this list values and appreciates very much; and you also happen to have CHARGE. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 25, 2006 Report Posted March 25, 2006 Tim, I just read this message. Once again, nice! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to In a message dated 3/23/2006 11:41:49 AM Eastern Standard Time, Tim.hartshorne@... writes: Hi Chantelle, You are absolutely right that those life experiences you had probably caused the PTSD. PTSD cannot be caused by CHARGE. What I meant to say is that I believe a lot of kids with CHARGE have a lot of stress experiences that might be result in PTSD. There is new research that suggests that early childhood experiences of pain can cause PTSD in children. I think all of the surgeries that has gone through probably have resulted in some PTSD. I think this kind of stress probably makes things like OCD worse. It probably also makes the sleep problems that seem common in CHARGE worse. But the thing we all have to keep in mind is that having CHARGE is only part of who you are. You are a person first, and in particular you are a person everyone on this list values and appreciates very much; and you also happen to have CHARGE. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Guest guest Posted March 25, 2006 Report Posted March 25, 2006 Tim, I just read this message. Once again, nice! Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to In a message dated 3/23/2006 11:41:49 AM Eastern Standard Time, Tim.hartshorne@... writes: Hi Chantelle, You are absolutely right that those life experiences you had probably caused the PTSD. PTSD cannot be caused by CHARGE. What I meant to say is that I believe a lot of kids with CHARGE have a lot of stress experiences that might be result in PTSD. There is new research that suggests that early childhood experiences of pain can cause PTSD in children. I think all of the surgeries that has gone through probably have resulted in some PTSD. I think this kind of stress probably makes things like OCD worse. It probably also makes the sleep problems that seem common in CHARGE worse. But the thing we all have to keep in mind is that having CHARGE is only part of who you are. You are a person first, and in particular you are a person everyone on this list values and appreciates very much; and you also happen to have CHARGE. Tim S. Hartshorne, Ph.D. School Psychology Program Director Professor of Psychology Central Michigan University Mount Pleasant, MI 48859 phone fax tim.hartshorne@... Quote
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.