Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Hello All: We have a beautiful 10 year old daughter with CHARGE. We have and continue to deal with the array of CHARGE related medical issues i.e. cardiac,vision,hearing etc. We and Rose Ellen have managed these issues as best we can with the valuable help of her doctors. However, the biggest problem we are confronting is a behavioral one. The behavior includes uncontrollable laughter, yelling and screaming and in short, she just cannot control herself. She is an intelligent girl and is fully aware of when " the sillies " are coming yet she can't stop them. We have tried every method of " behavior management " as suggested by professionals with no success. She has been diagnosed with ADHD, although we have our doubts about the diagnosis. She has had neuro-psych evals., we've learned about sensory integration issues and we've got no answers. Reluctantly and with the advice of her doctor, we agreed to try an amphetamine treatment:Concerta. She was on the verge of being removed from her integrated classroom. She was almost always expressing inappropriate behavior. The concerta helped her to focus and she managed to hold it together during the school day. She was promoted to fifth grade. Late this summer she developed profound tics as a side effect of the concerta.(We were aware of this potential side effect). Ater one+ year on the concerta we were surprised, but were told they could present anytime. They included jerking her head and arms and just recently verbal tics. We were already dealing with problems socializing with her peers. With hearing aids, glasses, behavior etc. she has not developed any close friendships. The tics would leave her totally ostracized. She was aware of the tics, that she couldn't control them and begged for help. We dicontinued the concerta and have not yet heard back from the Dr. for alternatives. The tics have stopped. The " bad " behaviors have returned and now include loud incessant arguing about any request we make of her. (There have been no significant changes in her home life ,i.e. new or additional stressors). We are at wits end and fear for her educational and social development. We would appreciate any help or advice anyone can offer including medications/treatments, anything. Thanks , Janet and RoseEllen (10 y.o.CHARGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 Janet, I feel this can be one of the most frustrating features of CHARGE for the child and the family to cope with. They overcome so many other things, then the behaviors crop up and they create such a negative impact on any progress towards socializing with others. There was a symposium at the last CHARGE conference focused on behavior in CHARGE. The handouts are still available from the CHARGE foundation and the audiotapes of the sessions are available through Sounds On Tape. The professional are only beginning to get a glimpse into how common behavior issues are with CHARGE. Recognizing they occur, but no magic solutions just yet. These seem to be beyond the impact one can attribute to deafblind issues or frustration with communication issues etc. It is my strong bias that these issues are neurological in nature. In some ways they involve features of executive function, like you see in ADD, but for my child I believe it is different than ADD. They also seem to involve a difficulty in self-regulation, for example once they get over-stimulated their brain goes nuts and you see these excessive or what I call frantic behaviors. For my child he needs a quiet, calm safe place where he can go when he is in these states, so he can get the wild or silly out of his system and calm himself back down. This respects his physical need for this behavior, and allows him the chance to learn to regulate himself. When folks at school get involved and vigorously tell him no or get excited about it he only gets more wild, so then they get mad at him. Once they switched to this approach it has worked much better. For a child who has language and wants to be included and liked with her peers, this would allow your daughter a safety net of being " silly " in private and then coming back to class when she is in control of herself. It seems to me that she would not want to be away from the peers unless she " had " to, so would be motivated to get back to class as soon as she could. Removing the pressure of being " silly " in front of her peers may also help alleviate the stress that can contribute to such states. My child also developed tics this summer (he hadn't been on any meds) and it was awful. He does not have the language or awareness of how others feel about him to care about that, but it was exhausting to watch him. He was a neurological mess. There are many young people with CHARGE on a variety of psychiatric medications that really make a difference for them. The trick seems to be finding a psychiatrist that can take into account the uniqueness of CHARGE and how that impacts the behavioral issues. I have been trying to avoid medication thus far. (My older child is on meds for ADD, so it is not that I am against meds, I am against guessing on which med for a very complex, variable nervous system, such as Dylan's.) After the onset of the tics it pushed me over the edge to going to the HANDLE Institute out of Seattle, WA for a more gentle approach to strengthening his nervous system. I have been very pleased with the results, since we went two weeks ago. The exercises have given us a tool to help Dylan calm himself back down. Yesterday at my mom's I was taking a nap and my sister-in-law was watching him. About 2:30 he got wild, running, laughing, throwing things etc. I got up and did his exercises with him. My sister-in-law was watching me and she said, " He put my hands on his head and then on his feet. " He was telling her to do the exercises, but she did not know how. After the 20 minute session he calmed down for the rest of the afternoon. His Intervener at school has noticed the same thing. The first Monday back he had a 45 minute uncontrollable laughing attack - she couldn't think which exercise to do. Then on Tues, the laughing started accompanied with throwing. She did some of his HANDLE exercises, then he got up and went and got his schedule book out and went back to work. The rest of the afternoon was saved. I am not sure if something like HANDLE is available where you are, but have hope that there are options out there, and believe that she is doing her best to control the behavior. Respecting that instead of coming down hard on her to change something that is out of her control will go along way towards coping with the problem. Good luck. Kim L Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16 If you are new to the list you can find more on these topics in the archives, under behavior, tics, HANDLE, and my student. Seeking help Hello All: We have a beautiful 10 year old daughter with CHARGE. We have and continue to deal with the array of CHARGE related medical issues i.e. cardiac,vision,hearing etc. We and Rose Ellen have managed these issues as best we can with the valuable help of her doctors. However, the biggest problem we are confronting is a behavioral one. The behavior includes uncontrollable laughter, yelling and screaming and in short, she just cannot control herself. She is an intelligent girl and is fully aware of when " the sillies " are coming yet she can't stop them. We have tried every method of " behavior management " as suggested by professionals with no success. She has been diagnosed with ADHD, although we have our doubts about the diagnosis. She has had neuro-psych evals., we've learned about sensory integration issues and we've got no answers. Reluctantly and with the advice of her doctor, we agreed to try an amphetamine treatment:Concerta. She was on the verge of being removed from her integrated classroom. She was almost always expressing inappropriate behavior. The concerta helped her to focus and she managed to hold it together during the school day. She was promoted to fifth grade. Late this summer she developed profound tics as a side effect of the concerta.(We were aware of this potential side effect). Ater one+ year on the concerta we were surprised, but were told they could present anytime. They included jerking her head and arms and just recently verbal tics. We were already dealing with problems socializing with her peers. With hearing aids, glasses, behavior etc. she has not developed any close friendships. The tics would leave her totally ostracized. She was aware of the tics, that she couldn't control them and begged for help. We dicontinued the concerta and have not yet heard back from the Dr. for alternatives. The tics have stopped. The " bad " behaviors have returned and now include loud incessant arguing about any request we make of her. (There have been no significant changes in her home life ,i.e. new or additional stressors). We are at wits end and fear for her educational and social development. We would appreciate any help or advice anyone can offer including medications/treatments, anything. Thanks , Janet and RoseEllen (10 y.o.CHARGER) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 , I don't have any miracles or answers but wanted to let you know that I hope you find something that works. We battle different behaviors with and find that they can be more frustrating than the medical issues that we went through early on. Good luck! Sheryl Mom to Mitch 18 & 18 CHARGE > Hello All: > > We have a beautiful 10 year old daughter with CHARGE. > > We have and continue to deal with the array of CHARGE related medical issues > i.e. cardiac,vision,hearing etc. > We and Rose Ellen have managed these issues as best we can with the valuable > help of her doctors. However, the biggest problem we are confronting is a > behavioral one. The behavior includes uncontrollable laughter, yelling and > screaming and in short, she just cannot control herself. She is an > intelligent girl and is fully aware of when " the sillies " > are coming yet she can't stop them. > > We have tried every method of " behavior management " as suggested by > professionals with no success. She has > been diagnosed with ADHD, although we have our doubts about the diagnosis. > She has had neuro-psych evals., > we've learned about sensory integration issues and we've got no answers. > > Reluctantly and with the advice of her doctor, we agreed to try an > amphetamine treatment:Concerta. She was on the verge of being removed from her > integrated classroom. She was almost always expressing inappropriate behavior. > The concerta helped her to focus and she managed to hold it together during > the school day. She was promoted to > fifth grade. > > Late this summer she developed profound tics as a side effect of the > concerta.(We were aware of this potential side effect). Ater one+ year on the concerta > we were surprised, but were told they could present anytime. They included > jerking her head and arms and just recently verbal tics. We were already > dealing with problems socializing with her > peers. With hearing aids, glasses, behavior etc. she has not developed any > close friendships. The tics would leave her > totally ostracized. She was aware of the tics, that she couldn't control them > and begged for help. We dicontinued > the concerta and have not yet heard back from the Dr. for alternatives. The > tics have stopped. The " bad " behaviors > have returned and now include loud incessant arguing about any request we > make of her. (There have been no significant > changes in her home life ,i.e. new or additional stressors). > > We are at wits end and fear for her educational and social development. > > We would appreciate any help or advice anyone can offer including > medications/treatments, anything. > > Thanks > , Janet and RoseEllen (10 y.o.CHARGER) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 HI and Janet, I have not forgotten you--I am working on this for you!! pam > ---------- > From: BRIMOY@... > Reply To: CHARGE > Sent: Sunday, September 12, 2004 1:55 PM > To: CHARGE > Subject: Seeking help > > Hello All: > > We have a beautiful 10 year old daughter with CHARGE. > > We have and continue to deal with the array of CHARGE related medical issues > i.e. cardiac,vision,hearing etc. > We and Rose Ellen have managed these issues as best we can with the valuable > help of her doctors. However, the biggest problem we are confronting is a > behavioral one. The behavior includes uncontrollable laughter, yelling and > screaming and in short, she just cannot control herself. She is an > intelligent girl and is fully aware of when " the sillies " > are coming yet she can't stop them. > > We have tried every method of " behavior management " as suggested by > professionals with no success. She has > been diagnosed with ADHD, although we have our doubts about the diagnosis. > She has had neuro-psych evals., > we've learned about sensory integration issues and we've got no answers. > > Reluctantly and with the advice of her doctor, we agreed to try an > amphetamine treatment:Concerta. She was on the verge of being removed from her > integrated classroom. She was almost always expressing inappropriate behavior. > The concerta helped her to focus and she managed to hold it together during > the school day. She was promoted to > fifth grade. > > Late this summer she developed profound tics as a side effect of the > concerta.(We were aware of this potential side effect). Ater one+ year on the concerta > we were surprised, but were told they could present anytime. They included > jerking her head and arms and just recently verbal tics. We were already > dealing with problems socializing with her > peers. With hearing aids, glasses, behavior etc. she has not developed any > close friendships. The tics would leave her > totally ostracized. She was aware of the tics, that she couldn't control them > and begged for help. We dicontinued > the concerta and have not yet heard back from the Dr. for alternatives. The > tics have stopped. The " bad " behaviors > have returned and now include loud incessant arguing about any request we > make of her. (There have been no significant > changes in her home life ,i.e. new or additional stressors). > > We are at wits end and fear for her educational and social development. > > We would appreciate any help or advice anyone can offer including > medications/treatments, anything. > > Thanks > , Janet and RoseEllen (10 y.o.CHARGER) > > > Quote Link to comment Share on other sites More sharing options...
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