Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 My daughter has this also, she was born with cataracts, had them removed at age 2 wks, but is still considered legally blind, with nystagmus and some other visual things.Asphakia I beleive.Jeanette is 11 now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 In a message dated 4/25/04 9:02:07 AM Central Daylight Time, writes: > > > I had a duh moment tonight....Karrie has been refusing to climb stairs for > several weeks now. With my broken ankle, carrying her upstairs has been > impossible for me, so Kate has been bringing her up. I got a note from > school saying Karrie will sit at the top of the hill on the playground at > recess, crying because she is afraid to go down the hill to the equipment. > She often asks before her bath if there is water in the tub. Tonight, she > cautiously stuck her hand into the tub and it hit me....she has very little > depth perception! After putting both depth perception and nystagmus into a > search engine, sure enough, the two go hand in hand. > > > > I feel like such an idiot for not catching it sooner. She (according to the > articles I read) probably has very impaired vision. I know that she is very > far-sighted. My poor baby, yet more troubles. Since she has a dx of having > very high levels of anxiety, I thought that was the problem with the stairs > and the hill at school. She plain can't judge where she is! > > > > Anyone else have a child with significant nystagmus? I'd like to get some > ideas on how to help her. > > > > TIA > > > > Sue mom to Kate 14 and Karrie 7 w/ds, bipolar, OCD, high levels of anxiety, > AAI, nystagmus and who knows what else. Sue, has nystagmus. When he looks at things close up he turns his head so he is looking out of the corner of his eye. Dr. says that is how he is steadying his eye so he can see. I really don't see it affecting otherwise. I know he can't pour for diddly. What a mess. I attribute that to some depth perception issues (possibly) but he does well on the trampoline and can hit a baseball quite well. I do think that sometimes he misjudges distances (part of that is concentration on his part) but he can throw a toy or ball at anything with great accuracy. Poor sweetie, hope you can get some help for her. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2004 Report Share Posted April 25, 2004 > > Anyone else have a child with significant nystagmus? Fiona had a terrible nystagmus after her heart surgery. That apparently is one of the side effects of the long and deep anesthetic and of having the body temperature dropped severely during the whole operation. It took her about half a year for it to go away enough so that you didn't see it any more just looking at her and then another half a year before the doc said it was gone. She was just a baby tho. Not even crawling yet. So I have no good ideas how to help your daughter. sorry! Gundula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2004 Report Share Posted April 26, 2004 My son Charlie had congenital cataracts and has also always had some degree of nystagmus. He's now aphakic in right eye (OD) and pseudophakic in left (OS). His nystagmus and strabismus have lessened hugely over time. His null point to dampen his nystagmus seems to be over the bridge of his nose, not convenient for negotiating steps. But then he's not really walking yet. I used to belong to an aphakic group but never went for the nystagmus group. But there is one at http://www.nystagmus.org/links.html And they seem to offer a choice of message boards: http://www.nystagmus.org/discus/messages/board-topics.html There has also been some progress in developing a surgical treatment for both congenital and acquired nystagmus. See one article at http://www.uhhs.com/Article_Detail.aspx?ID=171 & MID=152 Sounds like you pretend to do the muscle surgery for strabismus but just sew the muscles back where they were, and it works 9 times out of 10. Interesting, but no thanks. Charlie seems to have improved enough where I hope we won't be going in for any more surgeries. Regards and good luck to all the kids, including my little guy, with Ds and eye problems, Bob Black, oh and here's a couple more links, Charlie http://home.earthlink.net/~wrblack/ & his little brother http://home.earthlink.net/~wrblack/robertsphotoalbum/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 , Yes, Ibric (Dribric@...) trained some one on the Roshi with some success. I do not know the details but heard her talk about it and I also heard the man she trained speak of his experience On Mar 26, 2005, at 7:00 AM, Kittredge wrote: > > Hello all, > > Have any of you ever used neurfeedback for nystagmus? If you were > able to help someone with this, what was your training approach? I > found one reference to one anecdotal report in the group archives but > that was all. > > Thanks, > > Kittredge > Bridgeside Counseling and Neurofeedback > 13 Ocean Street > South Portland, Maine 04107 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 Oops, that's DrIbric@..., /ChuckD.... http://roshi.com/-----Original Message----- From: Sent: Mar 26, 2005 8:04 AM Subject: Re: Nystagmus ,Yes, Ibric (Dribric@...) trained some one on the Roshi with some success.I do not know the details but heard her talk about it and I also heard the man she trained speak of his experienceOn Mar 26, 2005, at 7:00 AM, Kittredge wrote:>> Hello all,>> Have any of you ever used neurfeedback for nystagmus? If you were> able to help someone with this, what was your training approach? I> found one reference to one anecdotal report in the group archives but> that was all.>> Thanks,>> Kittredge> Bridgeside Counseling and Neurofeedback> 13 Ocean Street> South Portland, Maine 04107>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2005 Report Share Posted March 26, 2005 Well shoot, had an email crash last week and lost a lot of info, including- apparently- 's real address On Mar 26, 2005, at 11:10 AM, roshicorp@... wrote: > Oops, that's DrIbric@..., > > /ChuckD.... > http://roshi.com/ > > Re: Nystagmus > > , > > Yes, Ibric (Dribric@...) trained some one on the Roshi > with some success. > > I do not know the details but heard her talk about it and I also heard > the man she trained speak of his experience > > > On Mar 26, 2005, at 7:00 AM, Kittredge wrote: > > > > > Hello all, > > > > Have any of you ever used neurfeedback for nystagmus? If you were > > able to help someone with this, what was your training approach? I > > found one reference to one anecdotal report in the group archives but > > that was all. > > > > Thanks, > > > > Kittredge > > Bridgeside Counseling and Neurofeedback > > 13 Ocean Street > > South Portland, Maine 04107 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2005 Report Share Posted March 27, 2005 Thank you for info. I will contact Dr. Ibric On Sat, 26 Mar 2005 11:47:46 -0600, <gmartin@...> wrote: > Well shoot, > > had an email crash last week and lost a lot of info, including- > apparently- 's real address > > > On Mar 26, 2005, at 11:10 AM, roshicorp@... wrote: > > > Oops, that's DrIbric@..., > > > > /ChuckD.... > > http://roshi.com/ > > > > Re: Nystagmus > > > > , > > > > Yes, Ibric (Dribric@...) trained some one on the Roshi > > with some success. > > > > I do not know the details but heard her talk about it and I also heard > > the man she trained speak of his experience > > > > > > On Mar 26, 2005, at 7:00 AM, Kittredge wrote: > > > > > > > > Hello all, > > > > > > Have any of you ever used neurfeedback for nystagmus? If you were > > > able to help someone with this, what was your training approach? I > > > found one reference to one anecdotal report in the group archives but > > > that was all. > > > > > > Thanks, > > > > > > Kittredge > > > Bridgeside Counseling and Neurofeedback > > > 13 Ocean Street > > > South Portland, Maine 04107 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Can anyone tell me where to begin with a 8 year old with nystagmus. He reads and wirtes very little. His academics are around a 5 year old. Any suggestions? Has anyone else delt with this? Thanks, Betty Quote Link to comment Share on other sites More sharing options...
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