Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 I'm so sorry to hear about " s Dr. visit. Detached retina has been mentioned in CHARGE in the past. I have been thinking of all of you going through this difficult time. I hope he gets some relief soon. You are all in my thoughts daily. voight Mom to Mark 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 My daughter got the results from Dr. yesterday of 's ultra sound of the back of eye & the bad new is a detached retina. The Doc said it was not viable in his case to have surgery, so we are ti continue with the drops & monitor the pain management situation. The sight will not be able to be saved. He still is not eating & we continue to force feed him causing a great deal of stress & trauma for him. remebers from her notes at the St.Louis Conference, that detached retina was a distinct possibility. Has any one else had this kind of experience? Any suggestions with eating. He always seems to shut down when ill, but usually it's because he develops sores in the mouth as a secondary infection to an illness, but no evidence of that. Thanks for all the words of encouragement & prayers. It meant a great deal to me. I'm more resigned & accepting of the situation now. Grandma to Neal Fort ERie, Ontario Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Hi , We send our love. It sounds like a very difficult time. We just had our daughters eyes tested today and we also are aware of the detached retina issue. Because this fact with Coloboma is stated I'm sure it has happened to other children with CHARGE. I've never had to deal with the force feeding issue. You might get some suggestions from others here. While we worked on oral skills, we just topped up with her tube. We always wanted feeding to be pleasant. With it's appetite and distraction. Sometimes she's " too busy " she says, playing. It seems to be more important! Does Mathew and his family have support from outside services. In Ontario there are many different services to access. I know we did use nursing when we needed it, (and WOW- we used a Pediatric nursing service and they were GREAT-they helped with feeding, everything. The particular nurse we had, was very creative and was able to help a great deal) home care, (came and helped with cleaning, cooking) and services for assistants to help with care and carry out therapy that was planned by therapists. I used this time to spend with my other son and some personal space. For the child there are occupational therapists, teachers of the Deaf and teachers of the Blind, even DeafBlind teachers. I know is very lucky to have you and her family. I mentioned before my mother is quite elderly, so I didn't ask for her help with all of these issues, and my in-laws are not the type to get involved medically. I had friends to help, but a lot of the issues are very involved. Your love and committment are very comforting. is very lucky. Our best to you. The Rittgasser Family Keswick, Ontario ---------- To: chargeonelist Subject: s eye update Date: Wednesday, March 31, 1999 7:24 PM My daughter got the results from Dr. yesterday of 's ultra sound of the back of eye & the bad new is a detached retina. The Doc said it was not viable in his case to have surgery, so we are ti continue with the drops & monitor the pain management situation. The sight will not be able to be saved. He still is not eating & we continue to force feed him causing a great deal of stress & trauma for him. remebers from her notes at the St.Louis Conference, that detached retina was a distinct possibility. Has any one else had this kind of experience? Any suggestions with eating. He always seems to shut down when ill, but usually it's because he develops sores in the mouth as a secondary infection to an illness, but no evidence of that. Thanks for all the words of encouragement & prayers. It meant a great deal to me. I'm more resigned & accepting of the situation now. Grandma to Neal Fort ERie, Ontario Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Hi , I am so sorry your family is going through such a hard time. You all have been in our prayers. I do hope you can find some solution to the feeding problems. We had that same problems with KK. We would have to force feed her and that got us no where. Then she altogether stoped eating. She was very defensive when it came to getting food in her mouth. We ended up having to get a g-tube because she wouldn't eat and was loosing weight. The G-tube is a pain in the butt, but if this may be an option for , then that would allow him some time to get over the oral defensiveness. That is how we had to do it with KK. When she got the g-tube, we were still trying to get her to eat. But after a certain amount of formula going in her and at every 4 hours, and along with her stomach not emptying out correctly, made for some hard feeding times. But someone had suggested to us(from the list) that we should not try to feed her by mouth for a couple of days, maybe aweek or so. So I tryed it...it worked. She is now eating both by mouth and by tube. But I know the frustrations your family is going through when it comes to feeding. I do hope you can find something that works if the g-tube isn't an option. Korey mom to KK(age 3) ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Rempel wrote: > > My daughter got the results from Dr. yesterday of 's ultra > sound of the back of eye & the bad new is a detached retina. , I'm so sorry to hear about 's detached retina. Several years ago my son's retina also detached. He was operated on to try and re-attach it. The surgery worked for a short time only, and then it detached again. The doctors say it is not viable to try again as they may do more damage to the eye. It was very hard to accept this at the time but he does have some sight in his other eye and has adjusted very well. We do have his " good " eye checked very often (about every 4 months) to make sure we catch it early if it should begin to happen to the other eye. My opthamologist has been very encouraging in this regard. He is a specialist who is very well known in NJ so I value his opinion. He says it is very important to keep even the " bad " eye healthy, due to the scientific breakthroughs in the eye arena. He told me they are successfully experimenting with " growing " retina tissue and we may see transplants in our lifetime. Who knows? We can only hope! Regarding feeding, for many years my son just about lived on " Sustical " and " Ensure " puddings. They are vitamin and mineral enhanced puddings that come in cans and are used in hospitals alot for people with difficulty swallowing and eating. I don't know if they are available where you are, but they provide as much nutrition as a meal. (and they don't taste too bad either!) You may want to try something like this with . Best of luck to you. Joanne (mom to (12yrs. old)) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 > Regarding feeding, for many years my son just about lived on " Sustical " > and " Ensure " puddings. They are vitamin and mineral enhanced puddings > that come in cans and are used in hospitals alot for people with > difficulty swallowing and eating. Something else you could try would be ScandiShakes. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 1999 Report Share Posted April 1, 1999 Joanne, How do they test for detached retina? I take kelly to the eye doc. and they dilate her pupils - can they see her retina that way? On my last eye doc. visit he suggested that kelly have surgery to go in and " look " at her retina. But, i have heard that the doc can see her retina while her pupils are dilated. Also, what about a sonogram of the eye? I get very worried about this with because she only has sight out of one eye and if she looses that she will have no sight at all, but I am also worried about her going under anesthesia if she doesn't have to. Charlene - mom to kelly (10 - Charge), 12 and 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 1999 Report Share Posted April 2, 1999 Wipeout518@... wrote: > > From: Wipeout518@... > > Joanne, > > How do they test for detached retina? I take kelly to the eye doc. and they > dilate her pupils - can they see her retina that way? Charlene, In most cases, the eye doctor can see a detached retina by dialating and looking into the eyes. As I understand, they look for fluid seeping under the retina. Because my son is very uncooperative to staying still and having a very bright light in his one good eye, we have a difficult time doing this examination. Usually they do manage to get a good look but the retina specialist we see wants to thoroughly exam 's eye, under anesthesia, at least once every few years. We've had this done about twice now. He schedules us first in the day and we're in and out in a few hours. They did not have to even put him all the way under last time - just enough so he would be still while he looked. The most important thing for us to be watchful for is any change in 's ability to function with regards to his sight. This would be a sign of detachment and we'd need to contact the doctor immediately. You can't drive yourself crazy but we are aware of this and watch for any changes. In many cases, if caught early, the retina can be re-attached and will stay with no further problem. 's left eye was very bad at birth and was damaged further due to glaucoma which is why his re-attachment did not take. I know anesthesia is no picnic with our kids, but if the doctor has any concern, I'd suggest you let him get a good look. Contact me through my email or the list if you have any other questions. Good luck. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 1999 Report Share Posted April 2, 1999 joanne, thank you so much for your quick reply. I am going to call her eye doc as soon as I get off this computer and make the appointment to let him look under anesthesia. is 10, and he has never done this, so I guess its time. Charlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 -- >From: Wipeout518@... > >Joanne, > >How do they test for detached retina? I take kelly to the eye doc. and they >dilate her pupils - can they see her retina that way? On my last eye doc. >visit he suggested that kelly have surgery to go in and " look " at her retina. > But, i have heard that the doc can see her retina while her pupils are >dilated. ... Reply: A detatched retina is very painful, especially is the child is bending over. You would know (as Mathew's Grandma described) that there is something very wrong. It sometimes can be reattatched, especially if caught within 2 days, and usually should be an emergency proceedure. You are able to see the retina when eyes are dialated, and a coloboma of the retina can be caught by most opthamologists this way. Ask more ???, re: What is the reason for the doctor wanting a closer look at the eye? Ann Gloyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 I had a retina that nearly detached, and had major surgery to put a buckle in. There was no pain associated with the detachment itself. I did see flashing lights in the corner of my vision which tipped us off that something was going on. One thing to look for is a change in the child's vision. You can tell by behavior. A child who used to look at things, stops doing so, or has trouble getting around. My detachment was very slow. Others are quite fast. Tim Hartshorne (father of ) Tom Gloyn wrote: > > > -- > > >From: Wipeout518@... > > > >Joanne, > > > >How do they test for detached retina? I take kelly to the eye doc. > and > they > >dilate her pupils - can they see her retina that way? On my last eye > doc. > >visit he suggested that kelly have surgery to go in and " look " at her > > retina. > > But, i have heard that the doc can see her retina while her pupils > are > >dilated. ... > > Reply: A detatched retina is very painful, especially is the child is > > bending over. You would know (as Mathew's Grandma described) that > there is > something very wrong. It sometimes can be reattatched, especially if > > caught within 2 days, and usually should be an emergency proceedure. > You > are able to see the retina when eyes are dialated, and a coloboma of > the > retina can be caught by most opthamologists this way. Ask more ???, > re: > What is the reason for the doctor wanting a closer look at the eye? > Ann > Gloyn > > ----- > ------------------------------------------------------------------ > If you like orange and blue, then you will love our new web site! > http://www.onelist.com > Onelist: ing connections and information exchange > ------------------------------------------------------- > ---------------- > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a > member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
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