Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 ange i have a feeling he will say ocd coz that swat it seem s like and give him a big hug from me would u and tell him that i got my jstoma out lol > > Hi everyone, I'm sorry, I know that you have probably covered this > topic already, but I am in need of some advice. > My daughter , almost 6yo with CHaRGE started kindergarten > this year in a completely mainstream school, she has an aide with her > at recess and lunch to make sure she is safe because her balance is > pretty bad although she manages to walk around quite well most of the > time. She is really good with maths and can already read slightly > above the average level. Her writing is quite poor because she has > poor muscle tone in her hands, but she is getting by. She is well > liked by her class mates and by the teachers. Sounds wonderful I > know, but she is a major hand flapper. She always has been. The > problem is that she can't complete her work because she gets into a > flapping frenzy, the teacher reminds her about her work, she > immediately snaps out of it but goes right back to doing it again. > At story time (which is very exciting, I'm sure) she almost takes > off, it looks like she is going to fall off her chair. Her whole > body does these spasms, her arms and fingers go rigid, her legs pump, > her head goes off to one side, her eyes even slightly roll. It > scares the crap out of her teacher, some days the flapping is so bad > that the teacher has let her sit on her lap and she has had to hold > her arms, but then she said that her body was still twitching and > moving. It is distracting for the other children and I suppose for > the teacher too. The thing is, if you tell her to stop, she can snap > out of it, but she just goes back to doing it anyway, but that makes > me feel like she can't help doing it, but it isn't a fit. I don't > know, I really don't know!! > Is there anyone out there that might be able to give me some ideas??? > I have made an appointment for her to see Dr next > week, he is the doctor of all doctors of CHARGE syndrome over here in > Australia, I would like to have some of your ideas before I see him. > Thanks so much for your help. > , Sydney, Australia > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 ange i have a feeling he will say ocd coz that swat it seem s like and give him a big hug from me would u and tell him that i got my jstoma out lol > > Hi everyone, I'm sorry, I know that you have probably covered this > topic already, but I am in need of some advice. > My daughter , almost 6yo with CHaRGE started kindergarten > this year in a completely mainstream school, she has an aide with her > at recess and lunch to make sure she is safe because her balance is > pretty bad although she manages to walk around quite well most of the > time. She is really good with maths and can already read slightly > above the average level. Her writing is quite poor because she has > poor muscle tone in her hands, but she is getting by. She is well > liked by her class mates and by the teachers. Sounds wonderful I > know, but she is a major hand flapper. She always has been. The > problem is that she can't complete her work because she gets into a > flapping frenzy, the teacher reminds her about her work, she > immediately snaps out of it but goes right back to doing it again. > At story time (which is very exciting, I'm sure) she almost takes > off, it looks like she is going to fall off her chair. Her whole > body does these spasms, her arms and fingers go rigid, her legs pump, > her head goes off to one side, her eyes even slightly roll. It > scares the crap out of her teacher, some days the flapping is so bad > that the teacher has let her sit on her lap and she has had to hold > her arms, but then she said that her body was still twitching and > moving. It is distracting for the other children and I suppose for > the teacher too. The thing is, if you tell her to stop, she can snap > out of it, but she just goes back to doing it anyway, but that makes > me feel like she can't help doing it, but it isn't a fit. I don't > know, I really don't know!! > Is there anyone out there that might be able to give me some ideas??? > I have made an appointment for her to see Dr next > week, he is the doctor of all doctors of CHARGE syndrome over here in > Australia, I would like to have some of your ideas before I see him. > Thanks so much for your help. > , Sydney, Australia > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 ange i have a feeling he will say ocd coz that swat it seem s like and give him a big hug from me would u and tell him that i got my jstoma out lol > > Hi everyone, I'm sorry, I know that you have probably covered this > topic already, but I am in need of some advice. > My daughter , almost 6yo with CHaRGE started kindergarten > this year in a completely mainstream school, she has an aide with her > at recess and lunch to make sure she is safe because her balance is > pretty bad although she manages to walk around quite well most of the > time. She is really good with maths and can already read slightly > above the average level. Her writing is quite poor because she has > poor muscle tone in her hands, but she is getting by. She is well > liked by her class mates and by the teachers. Sounds wonderful I > know, but she is a major hand flapper. She always has been. The > problem is that she can't complete her work because she gets into a > flapping frenzy, the teacher reminds her about her work, she > immediately snaps out of it but goes right back to doing it again. > At story time (which is very exciting, I'm sure) she almost takes > off, it looks like she is going to fall off her chair. Her whole > body does these spasms, her arms and fingers go rigid, her legs pump, > her head goes off to one side, her eyes even slightly roll. It > scares the crap out of her teacher, some days the flapping is so bad > that the teacher has let her sit on her lap and she has had to hold > her arms, but then she said that her body was still twitching and > moving. It is distracting for the other children and I suppose for > the teacher too. The thing is, if you tell her to stop, she can snap > out of it, but she just goes back to doing it anyway, but that makes > me feel like she can't help doing it, but it isn't a fit. I don't > know, I really don't know!! > Is there anyone out there that might be able to give me some ideas??? > I have made an appointment for her to see Dr next > week, he is the doctor of all doctors of CHARGE syndrome over here in > Australia, I would like to have some of your ideas before I see him. > Thanks so much for your help. > , Sydney, Australia > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 , it is thrilling to hear about 's success and happiness at her mainstream school. I love learning of her reading progress and her friendships with the other children. Wowser. :-) Regarding the flapping, we have one young lady here with a similar issue. In fact we know a young boy who thinks she is wonderful but when Kendra either flaps her arms or blows raspberries, he tells me he is afraid of her. :-( Being a flapper doesn't seem to endear one to others. That being said, I've read that some people associate the flapping with an overgrowth of yeast. This may or may not be true. But if antibiotics have been used, or perhaps there are digestive issues, it is a possibility. I do not know the remedy other than to follow low yeast approaches in food if that is agreeable to you and the doctor. Considering gluten or casein intolerances is something to look into also. In general, it seems that for Kendra the arm flapping is related to an overabundance of neurological energy that comes out in this way. It is funny to watch her when I show her the sign for 'excited' and ask her if she could substitute the sign for the flapping because she does the flapping when she is really happy and excited. She does the sign for excited once or twice in a very bored sort of way and returns right away to flapping her arms with exuberance. My sign suggestion doesn't carry much authority with her. I suspect in our case there is a connection to the way the immune/endocrine system works, but I haven't found the exact key that allows Kendra to demonstrate this really great emotion in a way that is more likely to help her gain friends rather than frighten them away. Not long ago on the list we were revisiting the concept of brushing techniques. I wonder if talking to an occupational therapist about this technique, (if you are not familiar with it), might give you an option of a technique that could be implemented at school and that might impart a sense of calm that helps to reduce the hand/arm flapping. Mom to Kendra, and Camille Hand Flapping Hi everyone, I'm sorry, I know that you have probably covered this topic already, but I am in need of some advice. My daughter , almost 6yo with CHaRGE started kindergarten this year in a completely mainstream school, she has an aide with her at recess and lunch to make sure she is safe because her balance is pretty bad although she manages to walk around quite well most of the time. She is really good with maths and can already read slightly above the average level. Her writing is quite poor because she has poor muscle tone in her hands, but she is getting by. She is well liked by her class mates and by the teachers. Sounds wonderful I know, but she is a major hand flapper. She always has been. The problem is that she can't complete her work because she gets into a flapping frenzy, the teacher reminds her about her work, she immediately snaps out of it but goes right back to doing it again. At story time (which is very exciting, I'm sure) she almost takes off, it looks like she is going to fall off her chair. Her whole body does these spasms, her arms and fingers go rigid, her legs pump, her head goes off to one side, her eyes even slightly roll. It scares the crap out of her teacher, some days the flapping is so bad that the teacher has let her sit on her lap and she has had to hold her arms, but then she said that her body was still twitching and moving. It is distracting for the other children and I suppose for the teacher too. The thing is, if you tell her to stop, she can snap out of it, but she just goes back to doing it anyway, but that makes me feel like she can't help doing it, but it isn't a fit. I don't know, I really don't know!! Is there anyone out there that might be able to give me some ideas??? I have made an appointment for her to see Dr next week, he is the doctor of all doctors of CHARGE syndrome over here in Australia, I would like to have some of your ideas before I see him. Thanks so much for your help. , Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 I would love to hear what the Doctor suggests as my son is a constant hand flapper too.Because our children are so sensory deprived it is their only way to communicate and receive extra input/stimulation from their environment.This is the feedback they so often crave but are unfortunately unable to accesses it appropriately due to their disabilities. & Gwynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 daniel i believe george williums is going to the confrence so if he is u can meet him and talk and also tim and david brown r great people id recoment talking to bout this stuff at the confrence if ur going > > I would love to hear what the Doctor suggests as my son is a > constant > hand flapper too.Because our children are so sensory deprived it is their > only way to communicate and receive extra input/stimulation from their > environment.This is the feedback they so often crave but are unfortunately > > unable to accesses it appropriately due to their disabilities. > & Gwynne > > > -- stand up and speak up!!!!!!! and dont let the world hold you back just go for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 is a hand flapper, we say she is flying! I remember in Miami at CHARGE Conference at Sara Rosenfeldt 's lecture she talked about this. When our CHARGE'rs Flap and Flap their hands on their heads, when she asked the audience who's did this, about 80% raised their hands! It is a sensory thing, they need the stimulation. Perhaps if it happens at a time that is disruptive, the teacher could help her to redirect her " flapping " does it when she is excitied as well. Cathie, mom to ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Yes, my son is also a hand flapper and has been for years...let us know what the doc says. ck > >Reply-To: CHARGE >To: CHARGE > >Subject: Re: Hand Flapping >Date: Fri, 22 Jun 2007 11:13:20 +0100 > >I would love to hear what the Doctor suggests as my son is a constant >hand flapper too.Because our children are so sensory deprived it is their >only way to communicate and receive extra input/stimulation from their >environment.This is the feedback they so often crave but are unfortunately >unable to accesses it appropriately due to their disabilities. > & Gwynne > > _________________________________________________________________ Make every IM count. Download Messenger and join the i’m Initiative now. It’s free. http://im.live.com/messenger/im/home/?source=TAGHM_June07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Kennedy used to flap like crazy when she was excited too Cathie...it was just another way for her to express herself. She doesn't do it now much though. -- Weir Personal Web Site: http://chargesyndrome.info The Adventures of Kennedy Blog: http://chargesyndrome.blogspot.com Secretary, CHARGE Syndrome Foundation Inc: http://www.chargesyndrome.org Email: lisa@... " It is far better to grasp the universe as it really is than to persist in delusion, however satisfying and reassuring. " --Carl Sagan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 > > Hi everyone, I'm sorry, I know that you have probably covered this > topic already, but I am in need of some advice. > My daughter , almost 6yo with CHaRGE started kindergarten > this year in a completely mainstream school, she has an aide with her > at recess and lunch to make sure she is safe because her balance is > pretty bad although she manages to walk around quite well most of the > time. She is really good with maths and can already read slightly > above the average level. Her writing is quite poor because she has > poor muscle tone in her hands, but she is getting by. She is well > liked by her class mates and by the teachers. Sounds wonderful I > know, but she is a major hand flapper. She always has been. The > problem is that she can't complete her work because she gets into a > flapping frenzy, the teacher reminds her about her work, she > immediately snaps out of it but goes right back to doing it again. > At story time (which is very exciting, I'm sure) she almost takes > off, it looks like she is going to fall off her chair. Her whole > body does these spasms, her arms and fingers go rigid, her legs pump, > her head goes off to one side, her eyes even slightly roll. It > scares the crap out of her teacher, some days the flapping is so bad > that the teacher has let her sit on her lap and she has had to hold > her arms, but then she said that her body was still twitching and > moving. It is distracting for the other children and I suppose for > the teacher too. The thing is, if you tell her to stop, she can snap > out of it, but she just goes back to doing it anyway, but that makes > me feel like she can't help doing it, but it isn't a fit. I don't > know, I really don't know!! > Is there anyone out there that might be able to give me some ideas??? > I have made an appointment for her to see Dr next > week, he is the doctor of all doctors of CHARGE syndrome over here in > Australia, I would like to have some of your ideas before I see him. > Thanks so much for your help. > , Sydney, Australia > Dear , sounds so much like my son who is 7... has always flapped his hands and his legs go also ..we always thought it was a sensory thing with him..he also sometimes goes into hysterical fits of laughter at the same time...we think he is just a very happy kid!!! But as he is getting older and he started kindergarten last Sept.. (he is in a deaf hearing impaired school) we realized it was an issue as the other kids in his class are just deaf/hearing impaired and has so many other issues going on with the CHARGE....it is interupting when he starts with the hands and feet going but I am so lucky to have such an understanding teacher and 2 aides in his room...tho does not have a 1:1 aide( I think he will tho starting the new school year)They give deep pressure massage when he starts to " get excited " along with a weighted lap mat shaped like a turtle that he has on his legs when they are sitting doing their school work..he also wears a weighted vest at certain times throughout the day as they cant keep it on for long periods of time.He also is given a rubber ball to squeeze and at the end of the school year some brushing was incorporated, tho his teacher really didnt notice a big difference with that. We discussed s flapping with his pediatrician..who said some of the symptons sound like Angelman syndrome also known as happy puppet syndrome...the marionette like movements and the laughing and sometimes will start these episodes while staring at a light but not real consistently..which was ruled out by a nuerologist who then ordersd an EEG which showed seizure activity ( an MRI followed to reveal no brain tumor..but a diagnosis of Gelastic seizures was what the nuerologist came up with... was put on Trileptal which seemed to help the so called seizures somewhat for a while but as time goes on we have to keep uping his dose as they start to get worse again... would also wake up in the middle of the night and his arms and legs would start to go and he would laugh or squeel ,I dont know if you experience that with or not? Anyway Im am not totally convinced that the nuerologist has the right diagnosis so I will be curious as to what your Doctor comes up with...these beautiful children are so complex and such mysteries I think sometimes there might not be a right diagnosis and treatment..And I know where you are coming from when you say you are out and people stare I try to ignore it but sometimes its hard..people just dont know how to react to a kid flapping like that...we are used to it in our home...it is normal to us...whatever normal is in CHARGELAND!!!!!I know this post is long but I hope you can get something out of it..and by the way I am in the process of finding a new nuerologist..Im not too crazy about the one we have.... and after your post I read some interesting feedback to look into from other folks ..so thank you all.. P. mom to 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Hi , hand flapping can be about a lot of things, but it sounds like with that is about not being able to differentiate which muscles she needs to use when, so she uses all of her muscles or none, so when she gets excited she uses all her muscles. But it also sounds like she may be having some tics, which again can represent that once the muscles start they just can't stop. She can cognitiviely override them, but as soon as she goes back to work or the activitiy her brain power is on the task, not overriding the muscle movements. It sounds like she can't do both at once, support the work and stop the movement. Hope Dr. has some good ideas for you. If the other children know this is not something she can control all the time, they are usually very understanding. The teacher can then help find ways to gently cue her that she is doing it, but not make it a " bad " thing to do. Kim Lauger > > > > > > > Hi everyone, I'm sorry, I know that you have probably covered this > topic already, but I am in need of some advice. > My daughter , almost 6yo with CHaRGE started kindergarten > this year in a completely mainstream school, she has an aide with her > at recess and lunch to make sure she is safe because her balance is > pretty bad although she manages to walk around quite well most of the > time. She is really good with maths and can already read slightly > above the average level. Her writing is quite poor because she has > poor muscle tone in her hands, but she is getting by. She is well > liked by her class mates and by the teachers. Sounds wonderful I > know, but she is a major hand flapper. She always has been. The > problem is that she can't complete her work because she gets into a > flapping frenzy, the teacher reminds her about her work, she > immediately snaps out of it but goes right back to doing it again. > At story time (which is very exciting, I'm sure) she almost takes > off, it looks like she is going to fall off her chair. Her whole > body does these spasms, her arms and fingers go rigid, her legs pump, > her head goes off to one side, her eyes even slightly roll. It > scares the crap out of her teacher, some days the flapping is so bad > that the teacher has let her sit on her lap and she has had to hold > her arms, but then she said that her body was still twitching and > moving. It is distracting for the other children and I suppose for > the teacher too. The thing is, if you tell her to stop, she can snap > out of it, but she just goes back to doing it anyway, but that makes > me feel like she can't help doing it, but it isn't a fit. I don't > know, I really don't know!! > Is there anyone out there that might be able to give me some ideas??? > I have made an appointment for her to see Dr next > week, he is the doctor of all doctors of CHARGE syndrome over here in > Australia, I would like to have some of your ideas before I see him. > Thanks so much for your help. > , Sydney, Australia > > -- Kim Certified HANDLE Screener and Intern Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18 and wife to Roy who makes all things possible in our lives. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 /, this suggestion about OT and brushing could be a very important addition to 's program. I don't remember if has services from an OT or not. pam Re: Hand Flapping , it is thrilling to hear about 's success and happiness at her mainstream school. I love learning of her reading progress and her friendships with the other children. Wowser. :-) Regarding the flapping, we have one young lady here with a similar issue. In fact we know a young boy who thinks she is wonderful but when Kendra either flaps her arms or blows raspberries, he tells me he is afraid of her. :-( Being a flapper doesn't seem to endear one to others. That being said, I've read that some people associate the flapping with an overgrowth of yeast. This may or may not be true. But if antibiotics have been used, or perhaps there are digestive issues, it is a possibility. I do not know the remedy other than to follow low yeast approaches in food if that is agreeable to you and the doctor. Considering gluten or casein intolerances is something to look into also. In general, it seems that for Kendra the arm flapping is related to an overabundance of neurological energy that comes out in this way. It is funny to watch her when I show her the sign for 'excited' and ask her if she could substitute the sign for the flapping because she does the flapping when she is really happy and excited. She does the sign for excited once or twice in a very bored sort of way and returns right away to flapping her arms with exuberance. My sign suggestion doesn't carry much authority with her. I suspect in our case there is a connection to the way the immune/endocrine system works, but I haven't found the exact key that allows Kendra to demonstrate this really great emotion in a way that is more likely to help her gain friends rather than frighten them away. Not long ago on the list we were revisiting the concept of brushing techniques. I wonder if talking to an occupational therapist about this technique, (if you are not familiar with it), might give you an option of a technique that could be implemented at school and that might impart a sense of calm that helps to reduce the hand/arm flapping. Mom to Kendra, and Camille Hand Flapping Hi everyone, I'm sorry, I know that you have probably covered this topic already, but I am in need of some advice. My daughter , almost 6yo with CHaRGE started kindergarten this year in a completely mainstream school, she has an aide with her at recess and lunch to make sure she is safe because her balance is pretty bad although she manages to walk around quite well most of the time. She is really good with maths and can already read slightly above the average level. Her writing is quite poor because she has poor muscle tone in her hands, but she is getting by. She is well liked by her class mates and by the teachers. Sounds wonderful I know, but she is a major hand flapper. She always has been. The problem is that she can't complete her work because she gets into a flapping frenzy, the teacher reminds her about her work, she immediately snaps out of it but goes right back to doing it again. At story time (which is very exciting, I'm sure) she almost takes off, it looks like she is going to fall off her chair. Her whole body does these spasms, her arms and fingers go rigid, her legs pump, her head goes off to one side, her eyes even slightly roll. It scares the crap out of her teacher, some days the flapping is so bad that the teacher has let her sit on her lap and she has had to hold her arms, but then she said that her body was still twitching and moving. It is distracting for the other children and I suppose for the teacher too. The thing is, if you tell her to stop, she can snap out of it, but she just goes back to doing it anyway, but that makes me feel like she can't help doing it, but it isn't a fit. I don't know, I really don't know!! Is there anyone out there that might be able to give me some ideas??? I have made an appointment for her to see Dr next week, he is the doctor of all doctors of CHARGE syndrome over here in Australia, I would like to have some of your ideas before I see him. Thanks so much for your help. , Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Dear , Thank you for your email, it was very interesting and has also given me lots to look into. I thought that the hard part was over now that all the " medical " stuff is behind us, but there is always something. At the conference I went to here in Australia, there was a woman who gave a talk about " Chronic sorrow " and it was so interesting because it explained so much to me about how I am feeling. I am a happy person, I always have been, and I enjoy and appreciate all that I have, but I have this sadness that never really goes away. It is not a bad sadness, but a sadness that just lies under the surface and a sadness that no one can understand because they see all the improvements in my daughter. She is a wonderful child and I wouldn't even change her if I had a magic wand, but I feel sad that she is different even though I don't want her to be the same... I know that sounds like the biggest load of rubbish. But anyway, I feel much better just getting that off my chest... thanks! Thanks to everyone for your wonderful advice, and I will let you know what the doctor says after our appointment. cheers, > > > Dear , > sounds so much like my son who is 7... has > always flapped his hands and his legs go also ..we always thought it > was a sensory thing with him..he also sometimes goes into hysterical > fits of > laughter at the same time...we think he is just a very happy kid!!! > But as he is getting older and he started kindergarten last Sept.. > (he is in a deaf hearing impaired school) we realized it was an > issue as the other kids in his class are just deaf/hearing impaired > and has so many other issues going on with the CHARGE....it > is interupting when he starts with the hands and feet going but I am > so lucky to have such an understanding teacher and 2 aides in his > room...tho does not have a 1:1 aide( I think he will tho > starting the new school year)They give deep pressure massage > when he starts to " get excited " along with a weighted lap mat shaped > like a turtle that he has on his legs when they are sitting doing > their school work..he also wears a weighted vest at certain times > throughout the day as they cant keep it on for long periods of > time.He also is given a rubber ball to squeeze and at the end of the > school year some brushing was incorporated, tho his teacher really > didnt notice a big difference with that. > We discussed s flapping with his pediatrician..who said some > of the symptons sound like Angelman syndrome also known as happy > puppet syndrome...the marionette like movements and the laughing and > sometimes will start these episodes while staring at a light > but not real consistently..which was ruled out by a nuerologist who > then ordersd an EEG which showed seizure activity ( an MRI followed > to reveal no brain tumor..but a diagnosis of Gelastic seizures was > what the nuerologist came up with... was put on Trileptal > which seemed to help the so called seizures somewhat for a while but > as time goes on we have to keep uping his dose as they start to get > worse again... would also wake up in the middle of the night > and his arms and legs would start to go and he would laugh or > squeel ,I dont know if you experience that with or not? > Anyway Im am not totally convinced that the nuerologist has the > right diagnosis so I will be curious as to what your Doctor comes up > with...these beautiful children are so complex and such mysteries I > think sometimes there might not be a right diagnosis and > treatment..And I know where you are coming from when you say you are > out and people stare I try to ignore it but sometimes its > hard..people just dont know how to react to a kid flapping like > that...we are used to it in our home...it is normal to us...whatever > normal is in CHARGELAND!!!!!I know this post is long but I hope you > can get something out of it..and by the way I am in the process of > finding a new nuerologist..Im not too crazy about the one we > have.... and after your post I read some interesting feedback to > look into from other folks ..so thank you all.. > P. mom to 7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 , the idea of Chronic Sorrow comes up a lot here--I am sure you might have read about it. The book you are referring to is very good and I think, validates one's feelings. Of course you love and of course you appreciate and see all that she has done, but..... the " but " is always there. I am sure others will also chime in with their amazing words of wisdom from one mother to another. pam Re: Hand Flapping Dear , Thank you for your email, it was very interesting and has also given me lots to look into. I thought that the hard part was over now that all the " medical " stuff is behind us, but there is always something. At the conference I went to here in Australia, there was a woman who gave a talk about " Chronic sorrow " and it was so interesting because it explained so much to me about how I am feeling. I am a happy person, I always have been, and I enjoy and appreciate all that I have, but I have this sadness that never really goes away. It is not a bad sadness, but a sadness that just lies under the surface and a sadness that no one can understand because they see all the improvements in my daughter. She is a wonderful child and I wouldn't even change her if I had a magic wand, but I feel sad that she is different even though I don't want her to be the same... I know that sounds like the biggest load of rubbish. But anyway, I feel much better just getting that off my chest... thanks! Thanks to everyone for your wonderful advice, and I will let you know what the doctor says after our appointment. cheers, > > > Dear , > sounds so much like my son who is 7... has > always flapped his hands and his legs go also ..we always thought it > was a sensory thing with him..he also sometimes goes into hysterical > fits of > laughter at the same time...we think he is just a very happy kid!!! > But as he is getting older and he started kindergarten last Sept.. > (he is in a deaf hearing impaired school) we realized it was an > issue as the other kids in his class are just deaf/hearing impaired > and has so many other issues going on with the CHARGE....it > is interupting when he starts with the hands and feet going but I am > so lucky to have such an understanding teacher and 2 aides in his > room...tho does not have a 1:1 aide( I think he will tho > starting the new school year)They give deep pressure massage > when he starts to " get excited " along with a weighted lap mat shaped > like a turtle that he has on his legs when they are sitting doing > their school work..he also wears a weighted vest at certain times > throughout the day as they cant keep it on for long periods of > time.He also is given a rubber ball to squeeze and at the end of the > school year some brushing was incorporated, tho his teacher really > didnt notice a big difference with that. > We discussed s flapping with his pediatrician..who said some > of the symptons sound like Angelman syndrome also known as happy > puppet syndrome...the marionette like movements and the laughing and > sometimes will start these episodes while staring at a light > but not real consistently..which was ruled out by a nuerologist who > then ordersd an EEG which showed seizure activity ( an MRI followed > to reveal no brain tumor..but a diagnosis of Gelastic seizures was > what the nuerologist came up with... was put on Trileptal > which seemed to help the so called seizures somewhat for a while but > as time goes on we have to keep uping his dose as they start to get > worse again... would also wake up in the middle of the night > and his arms and legs would start to go and he would laugh or > squeel ,I dont know if you experience that with or not? > Anyway Im am not totally convinced that the nuerologist has the > right diagnosis so I will be curious as to what your Doctor comes up > with...these beautiful children are so complex and such mysteries I > think sometimes there might not be a right diagnosis and > treatment..And I know where you are coming from when you say you are > out and people stare I try to ignore it but sometimes its > hard..people just dont know how to react to a kid flapping like > that...we are used to it in our home...it is normal to us...whatever > normal is in CHARGELAND!!!!!I know this post is long but I hope you > can get something out of it..and by the way I am in the process of > finding a new nuerologist..Im not too crazy about the one we > have.... and after your post I read some interesting feedback to > look into from other folks ..so thank you all.. > P. mom to 7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2007 Report Share Posted June 24, 2007 Thanks Pam! > > , > the idea of Chronic Sorrow comes up a lot here--I am sure you might have read about it. The book you are referring to is very good and I think, validates one's feelings. Of course you love and of course you appreciate and see all that she has done, but..... the " but " is always there. > I am sure others will also chime in with their amazing words of wisdom from one mother to another. > pam > > > > Re: Hand Flapping > > Dear , > Thank you for your email, it was very interesting and has also given > me lots to look into. I thought that the hard part was over now that > all the " medical " stuff is behind us, but there is always something. > At the conference I went to here in Australia, there was a woman who > gave a talk about " Chronic sorrow " and it was so interesting because > it explained so much to me about how I am feeling. I am a happy > person, I always have been, and I enjoy and appreciate all that I > have, but I have this sadness that never really goes away. It is not > a bad sadness, but a sadness that just lies under the surface and a > sadness that no one can understand because they see all the > improvements in my daughter. She is a wonderful child and I wouldn't > even change her if I had a magic wand, but I feel sad that she is > different even though I don't want her to be the same... I know that > sounds like the biggest load of rubbish. But anyway, I feel much > better just getting that off my chest... thanks! > Thanks to everyone for your wonderful advice, and I will let you know > what the doctor says after our appointment. > cheers, > > > > > > > > Dear , > > sounds so much like my son who is 7... has > > always flapped his hands and his legs go also ..we always thought > it > > was a sensory thing with him..he also sometimes goes into > hysterical > > fits of > > laughter at the same time...we think he is just a very happy kid!!! > > But as he is getting older and he started kindergarten last Sept.. > > (he is in a deaf hearing impaired school) we realized it was an > > issue as the other kids in his class are just deaf/hearing impaired > > and has so many other issues going on with the CHARGE....it > > is interupting when he starts with the hands and feet going but I > am > > so lucky to have such an understanding teacher and 2 aides in his > > room...tho does not have a 1:1 aide( I think he will tho > > starting the new school year)They give deep pressure > massage > > when he starts to " get excited " along with a weighted lap mat > shaped > > like a turtle that he has on his legs when they are sitting doing > > their school work..he also wears a weighted vest at certain times > > throughout the day as they cant keep it on for long periods of > > time.He also is given a rubber ball to squeeze and at the end of > the > > school year some brushing was incorporated, tho his teacher really > > didnt notice a big difference with that. > > We discussed s flapping with his pediatrician..who said some > > of the symptons sound like Angelman syndrome also known as happy > > puppet syndrome...the marionette like movements and the laughing > and > > sometimes will start these episodes while staring at a > light > > but not real consistently..which was ruled out by a nuerologist who > > then ordersd an EEG which showed seizure activity ( an MRI followed > > to reveal no brain tumor..but a diagnosis of Gelastic seizures was > > what the nuerologist came up with... was put on Trileptal > > which seemed to help the so called seizures somewhat for a while > but > > as time goes on we have to keep uping his dose as they start to get > > worse again... would also wake up in the middle of the night > > and his arms and legs would start to go and he would laugh or > > squeel ,I dont know if you experience that with or not? > > Anyway Im am not totally convinced that the nuerologist has the > > right diagnosis so I will be curious as to what your Doctor comes > up > > with...these beautiful children are so complex and such mysteries I > > think sometimes there might not be a right diagnosis and > > treatment..And I know where you are coming from when you say you > are > > out and people stare I try to ignore it but sometimes its > > hard..people just dont know how to react to a kid flapping like > > that...we are used to it in our home...it is normal to > us...whatever > > normal is in CHARGELAND!!!!!I know this post is long but I hope you > > can get something out of it..and by the way I am in the process of > > finding a new nuerologist..Im not too crazy about the one we > > have.... and after your post I read some interesting feedback to > > look into from other folks ..so thank you all.. > > P. mom to 7 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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