Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Sundi, How did you know the detached retinas took place? I know there is a risk of that but I'm not sure the signs or symptoms. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Sundi, I am sooo sorry keep us posted please. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 We had a confirmation today that our 16yr old CHARGEr, n has detached retinas in both eyes. We have been referred to Childrens at the University of Washington to see if surgery is an option for him considering he also has bilateral colobomas. Has anyone else had this happen? I am sure the head banging has contributed to this result:( The worst part is that he is having a heard time getting around and can't see us sign to him anymore. Any input would be appreciated. Sincerely, Sundi Baggs CNN.com Video This is the correct link for the most concise part of the video - which features her visuals with a voice over from the synthesized voice of her thoughts in English. amazing. humbling. incredible.- http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 He acts completely blind. Runs into things, can't see us sign, can't see at all, even in his own home he is running into everything. Sundi Re: Detached retinas Sundi, How did you know the detached retinas took place? I know there is a risk of that but I'm not sure the signs or symptoms. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 One of mine are apparently " hanging by a thread " im not supposed to let anyting knock me in that side of the head. but i have defiently knocked that side of the head a few times..but can still see > > Sundi, > I am sooo sorry keep us posted please. > > ************************************** > AOL now offers free email to everyone. Find out > more about what's free from AOL at http://www.aol.com. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Sundi, How scary for you, and n. I'm sorry I don't know more about detached retinas but this isn't the first time they've been discussed with relation to teens with CHARGE here on the list. Please keep us updated and let us know what comes of the consult with U of Wash. www.chargesyndrome.info > > We had a confirmation today that our 16yr old CHARGEr, n has > detached retinas in both eyes. We have been referred to Childrens at the > University of Washington to see if surgery is an option for him considering > he also has bilateral colobomas. Has anyone else had this happen? I am sure > the head banging has contributed to this result:( The worst part is that he > is having a heard time getting around and can't see us sign to him anymore. > Any input would be appreciated. > Sincerely, > Sundi > > Baggs CNN.com Video > > This is the correct link for the most concise part of the video - which > features her visuals with a voice over from the synthesized voice of her > thoughts in English. amazing. humbling. incredible.- > > > http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 alli know it is a thing for chargers to look for maybe hes blinder than u think > > Sundi, > How scary for you, and n. I'm sorry I don't know more about detached > retinas but this isn't the first time they've been discussed with relation > to teens with CHARGE here on the list. Please keep us updated and let us > know what comes of the consult with U of Wash. > > www.chargesyndrome.info > > On 2/22/07, litlblubug@... <litlblubug%40aol.com> <litlblubug@...<litlblubug%40aol.com>> > wrote: > > > > We had a confirmation today that our 16yr old CHARGEr, n has > > detached retinas in both eyes. We have been referred to Childrens at the > > University of Washington to see if surgery is an option for him > considering > > he also has bilateral colobomas. Has anyone else had this happen? I am > sure > > the head banging has contributed to this result:( The worst part is that > he > > is having a heard time getting around and can't see us sign to him > anymore. > > Any input would be appreciated. > > Sincerely, > > Sundi > > > > Baggs CNN.com Video > > > > This is the correct link for the most concise part of the video - which > > features her visuals with a voice over from the synthesized voice of her > > thoughts in English. amazing. humbling. incredible.- > > > > > > > http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Sundi, I am sorry to hear of n's detachments. I hope you get some good information from the hospital. This is not unusual and I bet you are right that the head banging has had a BIG part in this. While some CHARGE kids have retinal detachments, my own thinking is that the bilateral detachments are not so common, especially simultaneously (, perhaps you have a thought?). I am sorry that he is having a hard time geting around--it seems that a referral for orientation and mobility is in order as well as trying to start tactile sign language with him. Will he let you sign in his hands? Do you have a local Deafblind consultant? pam Baggs CNN.com Video This is the correct link for the most concise part of the video - which features her visuals with a voice over from the synthesized voice of her thoughts in English. amazing. humbling. incredible.- http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 this is really sad, sorry for all of you, its bad enough with the colobomas, without extras!! hugs Les x > We had a confirmation today that our 16yr old CHARGEr, n has detached > retinas in both eyes. We have been referred to Childrens at the University > of Washington to see if surgery is an option for him considering he also has > bilateral colobomas. Has anyone else had this happen? I am sure the head > banging has contributed to this result:( The worst part is that he is > having a heard time getting around and can't see us sign to him anymore. > Any input would be appreciated. > Sincerely, > Sundi > > Baggs CNN.com Video > > > This is the correct link for the most concise part of the video - which > features her visuals with a voice over from the synthesized voice of her > thoughts in English. amazing. humbling. incredible.- > > http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 Hi Sundi, I sure hope Friday brings the best, best possible outcome for n. I'll be thinking of you both. in Ma. (, 21 yrs) <BR><BR><BR>**************************************<BR> AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 n will have surgery on his right eye this Friday and they will evaluate the left for future surgery. Sundi Baggs CNN.com Video > > > > This is the correct link for the most concise part of the video - which > > features her visuals with a voice over from the synthesized voice of her > > thoughts in English. amazing. humbling. incredible.- > > > > > > > http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 We are signing in his hand and a consultant will be out March 6th. You are so good Pam! Always thinking one step ahead. This group certainly is better with your input:) Sundi Baggs CNN.com Video This is the correct link for the most concise part of the video - which features her visuals with a voice over from the synthesized voice of her thoughts in English. amazing. humbling. incredible.- http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Sundi, I am glad to be of help--I (and I am sure others) will be interested in to hear what the consultant has to say and if she can be a good advocate for you and n. Keep us posted and all the best. pam Baggs CNN.com Video This is the correct link for the most concise part of the video - which features her visuals with a voice over from the synthesized voice of her thoughts in English. amazing. humbling. incredible.- http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2007 Report Share Posted February 28, 2007 Sundi, good luck with the surgery--hopefully the best outcome!!! pam Baggs CNN.com Video > > > > This is the correct link for the most concise part of the video - which > > features her visuals with a voice over from the synthesized voice of her > > thoughts in English. amazing. humbling. incredible.- > > > > > > > http://www.cnn.com/video/player/player.html?url=/video/health/2007/02/21/nat.aut\ ism.is.my.language.baggs > > > > Quote Link to comment Share on other sites More sharing options...
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