Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 My son, Bryce twictches his face both with and without his implant on. But the implant definitely increases the facial twitching. We have had to tone the volume down in mapping the implant oftentimes. And now when the facial stim is too much, we just turn the volume of the implant down one notch and that usually takes care of the problem. Sometimes turning down the sensitivity can eliminate the twitching as well. Since he twitches all the time (only slightly noticible), I try to judge when it becomes bothersome for him from the implant. His twitching seems to be more bothered by his implant when he has a lot of fluid or a sinus infection. Sometimes it really hurts his eye and he will yank the implant off at that time. Bryce is 9 and has had his implant for a long time so this is a learned skill by now. I hope you solve your dilemma. Deedee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 have you looked at facial palsy think thats common with those who do have it just an idea ellen > > My son, Bryce twictches his face both with and without his implant on. But > the implant definitely increases the facial twitching. We have had to tone > the > volume down in mapping the implant oftentimes. And now when the facial > stim is > too much, we just turn the volume of the implant down one notch and that > usually takes care of the problem. Sometimes turning down the sensitivity > can > eliminate the twitching as well. Since he twitches all the time (only > slightly > noticible), I try to judge when it becomes bothersome for him from the > implant. > His twitching seems to be more bothered by his implant when he has a lot > of > fluid or a sinus infection. Sometimes it really hurts his eye and he will > yank the > implant off at that time. Bryce is 9 and has had his implant for a long > time > so this is a learned skill by now. I hope you solve your dilemma. > > Deedee > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 My daughter has from time to time had a facial twitch, along with eye ticks. When she developed the eye tick along with the twitch we experimented with different medications. We had the most success with clonazepam, however it has a fatiguing effect. Recently both of those movements have disappeared totally and we are in the process of weaning her from the medication - we'll see what happens. from IL (Karlee 18) Facial Twitch? > Hi, I'm looking for some help with something new with Adele. She > recently began twitching/pulling her face to one side. It's to her > right side, opposite her facial palsy. It lasts for a second or two > and is in clusters throughout the day. > > The neurologist has ruled out seizures b/c she doesn't zone out at > all. Her cochlear implant is also a logical possibility (it's also > on the right). She twitches with and without the external piece on, > so we don't think it's the program. We are planning an X-ray to > double-check the internal placement - but I'm wondering if there is > something we aren't thinking of. Or maybe it is a normal expression > when you only have full control of one side of your face . . . ? > > If any of you have experience with a twitch - or have any ideas - we > would appreciate the help. > > Thanks so much! > -- > (mom to Adele, almost 2) > www.brandrup.com > username: baby > password: sugar > > > > > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 , How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 , How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 , How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. , mom to (4) --------------------------------- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi , I think you have a good theory. Adele's surgery was Dec '05 and it was turned on Jan '06. We only noticed the twitching in the last 2 weeks. Hopefully, it will go away on its own. Her surgeon has scheduled an x-ray to check the implant's positioning in relation to the nerve. Maybe that will provide some answers. Thanks to everyone who has offered insight on the twitch . . . I am using it all when I talk to the docs. :-) -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > , > > How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. > > , mom to (4) > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi , I think you have a good theory. Adele's surgery was Dec '05 and it was turned on Jan '06. We only noticed the twitching in the last 2 weeks. Hopefully, it will go away on its own. Her surgeon has scheduled an x-ray to check the implant's positioning in relation to the nerve. Maybe that will provide some answers. Thanks to everyone who has offered insight on the twitch . . . I am using it all when I talk to the docs. :-) -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > , > > How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. > > , mom to (4) > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 I got onto your website! It is amazing! I love that you all have put a face to CHARGE! My question...when is that beautiful commercial going to air? And will it air nationwide?? , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years -- Re: Facial Twitch? Hi , I think you have a good theory. Adele's surgery was Dec '05 and it was turned on Jan '06. We only noticed the twitching in the last 2 weeks. Hopefully, it will go away on its own. Her surgeon has scheduled an x-ray to check the implant's positioning in relation to the nerve. Maybe that will provide some answers. Thanks to everyone who has offered insight on the twitch . . . I am using it all when I talk to the docs. :-) -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > , > > How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. > > , mom to (4) > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 I got onto your website! It is amazing! I love that you all have put a face to CHARGE! My question...when is that beautiful commercial going to air? And will it air nationwide?? , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years -- Re: Facial Twitch? Hi , I think you have a good theory. Adele's surgery was Dec '05 and it was turned on Jan '06. We only noticed the twitching in the last 2 weeks. Hopefully, it will go away on its own. Her surgeon has scheduled an x-ray to check the implant's positioning in relation to the nerve. Maybe that will provide some answers. Thanks to everyone who has offered insight on the twitch . . . I am using it all when I talk to the docs. :-) -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > , > > How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. > > , mom to (4) > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 I got onto your website! It is amazing! I love that you all have put a face to CHARGE! My question...when is that beautiful commercial going to air? And will it air nationwide?? , mommy to Meagan (CHaRgE) and 17 months, and big brother 3 1/2 years, married to the best daddy in the world for 9 years -- Re: Facial Twitch? Hi , I think you have a good theory. Adele's surgery was Dec '05 and it was turned on Jan '06. We only noticed the twitching in the last 2 weeks. Hopefully, it will go away on its own. Her surgeon has scheduled an x-ray to check the implant's positioning in relation to the nerve. Maybe that will provide some answers. Thanks to everyone who has offered insight on the twitch . . . I am using it all when I talk to the docs. :-) -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > , > > How long has Adele had her implant? Our daughter also had facial twitching after her implant surgery. This lasted off and on for probably close to a year, then just gradually went away. There's another mom in my area who's daughter with CHARGE just had an implant in March, and her daughter has been having facial twitching ever since the surgery too. I'm wondering if it's due to the position of the facial nerve possibly being so close to the auditory nerve in some of our CHARGErs--'s nerves turned out to be very close, and so did the other child's I was mentioning. My theory is that the disturbance of the nerves during surgery, coupled with the stimulation of the auditory nerve through the implant being so close to the facial nerve, causes some intermittent twitching. That's just a theory, though--we never found anyone who could confirm that for sure. Hopefully, Adele's will eventually stop too, or you will get some answers in the meantime. > > , mom to (4) > > > --------------------------------- > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 , My 8 year old daughter has both sporadic eye movements and facial twitching. The eye movements are related to seizures and her facial twitching is stimulation from her CI. It sounds like you've ruled these out but I thought I'd let you know our experiences. Good luck with answers. Jeanie Colp mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 , My 8 year old daughter has both sporadic eye movements and facial twitching. The eye movements are related to seizures and her facial twitching is stimulation from her CI. It sounds like you've ruled these out but I thought I'd let you know our experiences. Good luck with answers. Jeanie Colp mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 , My 8 year old daughter has both sporadic eye movements and facial twitching. The eye movements are related to seizures and her facial twitching is stimulation from her CI. It sounds like you've ruled these out but I thought I'd let you know our experiences. Good luck with answers. Jeanie Colp mom to MacKenzie 8 CHARGE, Tyler 14 & Zachary 11 Quote Link to comment Share on other sites More sharing options...
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