|
Post by amyzimoski on Sept 30, 2004 10:02:29 GMT -5
Hi there-
We are facing yet another surgery with Natalie. This time her opthemologist wants to do surgery on her eyes. He says he will cut the muscle to stop her eyes from crossing. She has worn glasses since she turned 2 and she is now 5. He said that her eyes are still crossing even with the glasses. I am wiery about putting her through surgery. Her eyes turn in more when she is not weary her glasses but to be honest with you I don't really see that her eyes are crossing very badly with her glasses. I read the thread about eye crossing but still am uncertain. We go back in 6 weeks to take a look at them again. Even after surgery she will have to wear glasses for the rest of her life. Is her eyes crossing a bit really a big deal or is it making them work harder to see? I was hoping to find out if anyone else's kids have had it done and if they were pleased with the results.
Your opinion is so very much appreciated!
Thanks!
Amy
|
|
|
Post by momofrussell on Sept 30, 2004 10:39:54 GMT -5
Amy, not taking care of Strabismus CAN effect your child's vision and can also have other things happen to the eye. When not treated, Strabismus can become Amplyopia which is the eye not being used much if at all and can also lead to blindness sometimes. I gave you a link to read about it. www.medformation.com/ac/mm_qdis.nsf/qd/nd1942g.htmI am not telling you this to scare you, but because Russell HAS Amblyopia and Strabismus. Russell was born with Cataracts that were removed. He did not get his lens implants until he was 4. In the mean time, due to no lenses, he acquired Amblyopia and Strabismus. They are similiar but they "beginnings" are a bit different. Russell also has Nystagmus which means his eyes jiggle. He did have the muscle surgery for his left eye where the Strabismus was VERY prominent, but because of all the other issues, still has Amblyopia and does not use that eye much. I know my son probably has more eye issues then you daugheter but I just wanted to share the lasting effects these things can have on our kids. And, because Russell does not talk at all, we don't know how well he does see. Due to the Nystagmus and Ambliopia, he could very well still be legally blind even though he now has his lens implants. Russell use to wear glasses and we even had to patch for lenghts of time over the years, but it was too late for repair of the Amblyopia. So even though he had is muscle repaired his eye still turns in "lazy eye" and isn't used because Amblyopia set in. so... even though the surgery MAY seem not needed, it is... That is my opinion. We just went to the doctor last month and they noted he still doesn't use his eye much. Russell has a reconstructed pupil and everything to help that eye, but he doesn't use it. The other eye turns in some, but not lots. But the Left eye will be what it is unless they need to do another surgery. Without being treated, it may hinder your daughters full potential of learning. She will experience vision probs and it also may effect her depth perception. To PLEASE talk to you doctor a bit more and understand what can happen if not treated. Hugs.. this sounds like its a tough decision for you and I know you don't want you child to have unwarrented surgeries Sorry you have to make another decision. A.
|
|
|
Post by amyzimoski on Sept 30, 2004 10:49:07 GMT -5
wow! what a responce! you have so very well informed me..did you take med. classes? Even after all I have been through with Natalie I still can not remember the names of some of the problems that she has had (technical names that is). Your oppinion is greatly appreciated and indeed has helped me. I will talk to the doctor again in 6 weeks and if he does think she needs surgery well then that is just what we will have to do. Again thank you so much for your help!
Amy
|
|
|
Post by momofrussell on Sept 30, 2004 13:42:57 GMT -5
No.. no med classes.. I just sit my BUTT on this computer alot and "google" and learn.. I love to read, and love to learn and love to share knowledge... since knowledge is power Back when Russell was little.. I didn't know WHAT the heck the names were myself... all these terms and what they were. But we saw the eye doc WAY more then any other doc. They knew us by first name Every 3 months or so.. lots of procedures... lots of time to learn. Then... because of the kids starting out in school at 3, I really learned to advocate for him, and in order to do that, I had to really learn about what was going on with his eyes in order to make others understand what he needs, and make sure they don't SNOW me LOL. And.. I learned alot from here and other online support sites. I mean ALOT! So, I have to credit some of my knowledge to all these other wonderful moms and dads too! Hopefully Sherri will post up and a few other moms to give you their opinion. Like I said, Russell has more eye issues then JUST Strabismus.. and it might be good to hear from others that have had the surgery too and what their docs have said to them. Good luck! A.
|
|
|
Post by Evans Dad on Sept 30, 2004 14:43:16 GMT -5
Amy
Evan had the same surgery in March of this year. They caught it early enough with him. They were going to try glasses for correction but his Dr. told us that with the surgery Evan would have a much better chance of not wearing glasses.
The surgery went very well, and we noticed that he became a lot more alert, and had more fun looking at books and stuff that requires your eyes to work.
The surgery like all others worried us, it took the doctor about 25minutes per eye, he had both done while he was there. He had his surgery on a Wednesday and recovered very well, he went back to daycare on Monday of the following week, ofcourse we had to explain that he did not have pink eyes because the eyes stay red of 2-3 weeks after surgery.
I am glad we did this and we don't have to fight with glasses yet, I guess there is always a chance down the road that he will need something since both Jen and I wear contacts anyways.
Hope this helped Clint
|
|
|
Post by momofrussell on Sept 30, 2004 17:14:44 GMT -5
Yeah, thanks Evan's Dad for saying how simple the surgery is.. I kinda went off on a tangent LOL. It IS a simple surgery. Russell actually had his along when they repaired and reconstructed his pupil so his surgery took longer.. but the Strabismus Surgery was itself is simple and easy and quick... an out patient thing for most.
A.
|
|
|
Post by logansmom on Sept 30, 2004 19:57:26 GMT -5
Our son, Logan, actually had this surgery TODAY. Of course we were nervous, but everything went really well. The surgery itself took about 50 minutes, but we were there a lot longer getting everything ready and waiting while he was in recovery.
Like you, we didn't think Logan's eyes looked "that bad." We did try using a patch two hours a day for about four months. Logan is 18 months old, and when he had a regular appointment with the opthalmologist on Monday he said that the patch wasn't working like he had hoped and wanted us to schedule surgery. He said it was very important for Logan's future vision to make sure that this problem was taken care of. There was an opening in his schedule for today, so that's what we did.
Right now, Logan's eye (they only had to operate on one eye) is very red. They lengthened one of the eye muscles and shortened the other. Logan had had tylenol for the pain, but he really doesn't seem to mind too much. He played a little, ate a small amount of dinner, watched his favorite video while snuggling in Mommy's lap, and went to bed early. He's worn out . . . but I'm pretty sure he'll be feeling a lot better by morning. He's able to return to day care on Monday, and he goes back to the doctor next week for a check up.
Hope this helps.
Kim
|
|
|
Post by Jenn on Sept 30, 2004 22:44:37 GMT -5
Thats a tough decision.... Courtney still wears glasses for it....It doesn't do it all of the time....mainly when she is tired or sick....but has improved over time SLOWLY but surely....Courtney is 10. She started wearing the glasses at 2.5 years old. It has not affected her vision in the least bit. I do know that Evan and Russell's eyes were a little more involved than Nat's seem to be. Who does she see? Is it possible for you to make a trip to Shreveport? Dr. Richards is VERY experienced and we got a new doc from somewhere else that seems to be EXCELLENT too. They are both at LSU Medical Center. Do you have any pictures of her crossing her eyes? I don't believe I have seen any when they were....
|
|
|
Post by Jenn on Sept 30, 2004 22:46:18 GMT -5
Poor Logan! Get better buddie! I hope he feels better soon....
|
|
|
Post by momofrussell on Oct 1, 2004 6:45:28 GMT -5
Jenn, they probably watch Courtney's eye to make sure it doesn't do it worse also which is good. They waited and watched Russell and his eye for a couple years before they decided to do the surgery. I don't think they do it when it's a little bit.. but a lotta bit turned LOL.
A.
|
|
|
Post by amyzimoski on Oct 1, 2004 10:15:54 GMT -5
Jenn-
We see Dr. Piccione and he is used by quite a lot of other kids I know and seemed to be very informed on kids with DS. I looked for a pic that had Natalie's eyes crossed but could not find one. In every picture her eyes are straight. They go crossed really bad without her glasses but when her glasses are on I really don't see it happen much. But Natalie also does not keep her glasses on and her eyes tear all the time making them very dirty very quickly. He said that he would clean her tear ducts while he was in there. She was schedule for a tear duct cleaning last year because her eyes ran all the time but the doctor canceled it thinking she would grow out of it. I will be watching her closely for the next few weeks and see what they do. Seems the surgery is really minor and it may be good to just do it even if it doesn't seem to be to major. So far every surgery she has had has been a blessing. I actually hugged and thanked the doctor aboutu 100 times for taking her tonsils and adnoids out! It does help to know that a few other kids have had it and got through it without any problems. But we will see how things go for the next 6 weeks until the next appointment.
thank you everyone for you help!
Amy
|
|
|
Post by Jenn on Oct 1, 2004 11:34:33 GMT -5
Have they tried any allergy eye drops? Louisiana is a BAD state for allergies! Courtney's eyes teared up and got gunky alot....They finally decided to try Patanol and WHAM! No more gunky or tears!
This might not be the case for Natalie but I thought I would suggest it....Good Luck!
|
|
|
Post by amyzimoski on Oct 1, 2004 11:43:01 GMT -5
hey Jenn- Yes we have tried allergy shots and they work for a little while but then she becomes immune to them. I wouldn't go into surgery for just that because they are not that bad (at least not as bad as they used to be). As often as we had to put drops (only twice a day) it was such a huge fight because she hates her face to be messed with along with her hair,her feet,taking meds,her hands. Well you get the idea Any suggestions that you or anyone else has is really appreciated! Thanks- Amy
|
|
|
Post by Alice on Oct 1, 2004 12:03:03 GMT -5
Amy, Just good luck wish! Hugs to beauty-Natalie, Alice
|
|
|
Post by Sherri on Oct 1, 2004 13:22:50 GMT -5
Hi Amy,
I know that you mentioned that you had read the topic "eye crossing". I can't really add anything here different than what I had posted to Renee when she asked about eye muscle surgery. I will say that it's a "personal choice" & also whether you "trust" your Pediatric Ophthalmologist. I would like to remind you & everyone else that reads this post that it's not a "quick fix" so to speak or the answer to the problem. My son's eyes still turn in when he's tired or not feeling well. But it's not as bad as it used to be & he's had 2 eye muscle surgeries. I also keeping waiting for the doctor to say that Jared needs glasses, but that hasn't happened yet either. He's farsighted & his vision keeps improving with each eye exam.
I wish you guys all the best!! It's a tough decision to make as with any surgical procedure.
((Hugs)) Sherri
Below is some information that came out of the book "Medical & Surgical Care for Children with Down Syndrome" A Guide for Parents.
Binocular Fusion and Depth Perception
People see in three dimensions. We are able to perceive how close or far away objects are from us. For example, we can perceive that a creek is too wide to jump across or that a car is far enough away to cross in front of safely. Usually, both eyes send messages to the brain and the brain integrates, or fuses, them into on three-dimensional picture. This is what is meant by "binocular fusion."
Binocular fusion and depth perception require properly aligned eyes. It requires approximately straight eyes (but not necessarily exactly straight) in order for the brain to fuse the images from each eye into one picture. In strabismus, however, one eye is crooked, and consequently the brain cannot integrate the two images. Both eyes are not able to view the same object simultaneously. When this occurs, two things can happen: 1) the brain can see double, or 2) the brain can suppress the image from the deviated eye. Most all children, including children with Down syndrome, learn to suppress the deviated eye, resulting in loss of depth perception.
There are three types of strabismus, "esotropia" (when one or both eyes crosses inward), "exotropia" (when one or both eyes looks to the outside), and "hyper-or hypotropia" (when one eye looks up or down).
Besides the benefit of depth perception, straight eyes are also desirable for emotional and psychological reasons. Crooked eyes, especially in children with Down syndrome, convey a stereotypical image of mental retardation, and hinder other areas of development. For example, lack of depth perception would make learning games and sports much more difficult, and consequently would limit opportunities for these activities in the community. It is well worth the extra effort required in children with Down syndrome to enable them to function and be perceived as equals of other children. Absent crooked eyes, children with Down syndrome have the same ability for binocular fusion and depth perception as other children. Thus, it is highly recommended that aggressive treatment be obtained for straight eye alignment.
Some children who have good motor control, have strabismus only intermittently. However with fatigue, illness, anxiety, or stress, they cannot employ the necessary neuromuscular control that maintains straight eye alignment. Thus, you may see your child's eyes cross at bedtime, or when he is upset. How and when to treat children with this intermittent strabismus is controversial among specialist in this field. In general, if your child's eyes are usually straight, you can defer treatment; if your child is usually strabismic, something should be done to correct the eye alignment. If you don't, it could lead to lack of depth perception.
The usual treatments for strabismus are glasses or eye muscle surgery. Eye muscle surgery involves changing the muscles that control eye movement, either by lengthening or shortening them, or by altering how they attach to the eye or eye socket. The choice between glasses and surgery depends upon what your child's ophthalmologist finds during the eye exam. Eye exercises are not usually necessary or beneficial.
|
|