tag:blogger.com,1999:blog-4128082093166505960.post6389367177446545417..comments2023-04-26T04:46:37.500-07:00Comments on The Lutz Family Fun Page: Sticklers SyndromeMelanie Lutzhttp://www.blogger.com/profile/03461840660717694809noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4128082093166505960.post-70351643698454341582012-02-11T20:53:31.628-08:002012-02-11T20:53:31.628-08:00Amy-Tori has had some scar tissue. I can't te...Amy-Tori has had some scar tissue. I can't tell you how many times we have run into the eye center to have them say it's just scar tissue. So far it hasn't affected her too much other than the trips to the doctor. I'm hoping that that's all she gets, but I'm not going to hold me breath. She hasn't had any issues with her cornea, thankfully. She has adjusted really well to her artificial lens, and can see pretty well. She is lucky that the lasing has held the right eye so far. She's only had to have the one surgery on that one. Brett's cousin has had many...many....many surgeries because of the sticklers. They did finally remove one of her eyes, because of Glaucoma. She however is DRIVING...Working...She is a speech therapist and is a really sweet girl. All will be well!!!! =)Melanie Lutzhttps://www.blogger.com/profile/03461840660717694809noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-41122025116361602382012-02-11T17:05:01.571-08:002012-02-11T17:05:01.571-08:00Thank you for your response. I got so wrapped up ...Thank you for your response. I got so wrapped up in my daughter's recovery that I haven't checked back. She ended up with another detachment in her right eye, so far the left has held. She has a cataract developing on that eye and calcium accumulating on the cornea of her right. She also has scar tissue developing on both eyes. Did you daughter have either the cornea issue or scar tissue? If so, how did it play out for her?Amyhttps://www.blogger.com/profile/09904156857100505437noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-31442086704439510722011-12-11T20:23:10.313-08:002011-12-11T20:23:10.313-08:00amsafko: I have delayed posting this comment beca...amsafko: I have delayed posting this comment because I am not a doctor. =) I'm a Mom....so all I can really tell you is what my daughter has experienced. <br /><br />Tori did have a considerable amount of vision loss with her surgeries. The first surgery I was thrilled when she could see the gas bubble in her eye. The second surgery she developed a cataract so until she had the 3rd surgery it was pretty much assumed she wouldn't see until it was removed. These surgeries are very traumatic to the eyes, and so there will for sure be some healing and adjusting. I hope your daughter will recoup quickly. Hugs from us!!!!Melanie Lutzhttps://www.blogger.com/profile/03461840660717694809noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-14575420681254328372011-12-05T17:43:49.396-08:002011-12-05T17:43:49.396-08:00My 10 y.o. with Stickler's had surgery for a m...My 10 y.o. with Stickler's had surgery for a macula off retinal detachment this past Friday and will have her other eye (with the same type of detachment done this Friday). She was highly nearsighted prior (-11.5) and I am wondering what your knowledge is regarding additional vision loss after these types of detachments and surgeries. We are so overwhelmed by all of this...thanks.amsafkohttps://www.blogger.com/profile/12481749171356269620noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-33927910511117402302011-12-02T08:15:04.859-08:002011-12-02T08:15:04.859-08:00ebi: So far I think we have been pretty lucky. S...ebi: So far I think we have been pretty lucky. SADLY! My oldest son has had no signs of Sticklers. Our 11 year old daughter has had 2 retinal detachments and a catteract surgery. She is pretty near sighted. Our 8 year old so far has had no surgery but is painfully near sighted and one eye is quite a bit worse than the other. Our youngest is also near sighted and was born with a soft cleft palate as well as a hearing loss. All 3 of the kids have had only 1 joint dislocation. I think that's it...off the top of my head. =)Melanie Lutzhttps://www.blogger.com/profile/03461840660717694809noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-6280942895391887162011-11-29T17:35:49.283-08:002011-11-29T17:35:49.283-08:00Hello, I was just wondering what was the hardest t...Hello, I was just wondering what was the hardest thing that you or your children had to experience when it came to stickler? if you don't mind me asking?ebihttps://www.blogger.com/profile/06295672665695509370noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-42543567397419508772011-11-10T13:24:04.149-08:002011-11-10T13:24:04.149-08:00Hi, I just had a baby girl sep 29 2011 and She'...Hi, I just had a baby girl sep 29 2011 and She's going to be tested for the stickler syndrome soon. I would like to talk to people who have the syndrome or has a child with the syndrome. please contact me atlovemy4kids2@gmail.combaby Madelinehttps://www.blogger.com/profile/01390609335755428868noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-37952079790321627072011-10-18T23:17:40.224-07:002011-10-18T23:17:40.224-07:00My understanding is that the University of Utah Ho...My understanding is that the University of Utah Hospital does the genetic testing for Sticklers. We have not had the testing done. My husbands cousins family has so we did not have to have the testing done to get the diagnosis.Melanie Lutzhttps://www.blogger.com/profile/03461840660717694809noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-52403156841975447192011-10-18T11:43:18.965-07:002011-10-18T11:43:18.965-07:00I was wondering if you could tell me if there is a...I was wondering if you could tell me if there is any place in East Idaho or Utah that does genetic testing for Sticklers Syndrome?Jamiehttps://www.blogger.com/profile/12426005909029932942noreply@blogger.comtag:blogger.com,1999:blog-4128082093166505960.post-20695954410542079932010-08-23T13:12:58.801-07:002010-08-23T13:12:58.801-07:00Hello, I too have been effected by Stickler Syndro...Hello, I too have been effected by Stickler Syndrome. I have Stickler Syndrome with no genetic link found. I was just curious in hearing how Stickler Syndrome has effected your family. I've never talked to anyone else with Stickler Syndrome in their family or anybody who's even heard of it other than doctors. Please contact me at: harderalandas@yahoo.comKammiehttps://www.blogger.com/profile/16461696496409899284noreply@blogger.com