Experience with eye turns

I'm really needing some advice from those who have been there or who are currently there :crossfingers:

My DS is 7 years old, he has been seeing optometrists, behavioural optometrists & specialists from the age of 5 for a turn in his eye. We have been seeing a great behavioural optometrist who has helped a lot and we have also attended The Private Eye Clinic for specialised advice. I'm doing my best to understand exactly what these 'specialists' are talking abut but I must admit I struggle to fully comprehend it all.

The turn is in his right eye, it turns in when he tries to focus from a distance and is quite noticeable when he doesn't have his glasses on. It is not related to tiredness (as some can be). As a result of the turn in his eye his vision was suffering and he has been wearing glasses for 2 years. The glasses were to help with the vision as well as hopefully strengthen the turn in his eye. His eyes weren't functioning together, when trying to focus the right eye would turn, therefore vision not great and as a result the brain would 'switch off' the use of the right eye.

Last year (his first year of school) he went through with no issues at all, he was confident and capable of all that was asked of him. Although the behavioural optometrist appt he had late last year showed some stalling of continued improvement so we were sent off to the specialist again. That was this week and we have now been told to fill a prescription for bi-focal glasses for him. He was fairly confident that this would be successful although he did say that with the line in the glasses it could be quite noticeable to his classmates and it may be something he receives "attention" about. I'm hoping it's 'friendly attention' and not the opposite. He said by the age of ten he could be able to wear contact lenses and then by 20ish he could have laser surgery. So my husband and I took all that in but all the while thinking.... "what about the turn??" If I am understanding all this correctly this is to help his vision but is it going to straighten his eye? I have no issue with my son wearing glasses and so far neither does he, he has never once complained about wearing them but being so young and having the rest of his life ahead of him we would truly love to fix the turn in his eye. We questioned this and I explained how we were not concerned with him wearing glasses but would like for the turn to be fixed, we were heard but not offered any other options.

We are aware of the surgery available to do this and are not quite sure why this isn't being offered to him. I don't want to put my son through any unnecessary pain but what about his emotional health? I'm not trying to be too hung up on my son being slightly different from the rest but we all know that kids can be cruel and I don't my son to (potentially) go through something that could be avoidable. What I'm all worried about may never happen but being a mum brings a long so much worry and you just can't help it.

So I'd love to hear of anyone who has personal experience with dealing with any similar cases and how the people they saw for guidance regarding this dealt with it. I'm not sure if we try for another opinion, my MIL thinks we should and I think my husband would like to. I don't want to look like parents who are going from doctor to doctor to try and get what they want and as well as that it costs a whole lot of money.

I just need some help, thanks ladies :)

Did your DS ever use patches to try to strengthen the muscles in the eye that turns? Sil had the same problem & so did a friends dd. Both used patches over the good eye at around 2. For quite a while. Pretty sure sil was still using patches when I met her at 7. Just for a few hours here & there.

A friends dd had surgery to fix hers, but she was just a few months old. Maybe they prefer to do it at a young age?

Sorry, I have no personal experience, so I'm not much help.

In some cases, the muscle of the eye is so strong that it will only ever be able to be corrected to a certain point and then it won't get any better than that. My eldest child had a turned eye from about 10mths old and it was a result of being severely long sighted (probably from birth we've been told) and his eye turned so he was able to focus on fine motor skills (such as being able to see to screw a lid on a bottle etc). We saw a paed opthamologist when he was 5 and he was prescribed some pretty strong glasses and a patching regime for nearly 2 years. He had to wear a patch for 2 hours a day and 3-4 hours on weekends to strengthen the muscle in his eye as well as visual exercises which was really successful and the turn is gone. The opthamologist said that if it was more extreme, then surgery would be an option but he said we were lucky in that patching and glasses would be enough. Now at 13 his eyesight is pretty good considering -he can go for short periods of time when playing sport where he doesn't need his glasses though he is still long sighted and lasic surgery is an option in the future.

Whether or not the surgery is offered as an option would depend on a few things I'd say. DH's nephew has recently had the surgery done as his turned eye was bad enough that he had trouble seeing and was constantly tripping over and running into things. Close friends of ours have a DD who had a shocking turned eye and had her first surgery at 3, her second at about 8 and then one last year at 15. Each surgery has failed and the muscle pulls itself back to it's 'default' position. It's been advised that she doesn't have any more surgery because the risk of failure is too high as well as further damage to the muscle apparently so her eye is permanently turned. If the muscle is too strong, it will just keep pulling back and fail, so maybe they think this is a possibility of happening to your DS so they aren't offering it because he's not a good candidate for the surgery and they dont' want to put him through it if it's not going to work. If the turn hasn't been corrected after 2 years, it might be likely that it's not ever going to be corrected. I'd be asking them specifically why they aren't recommending that he has surgery and if you aren't happy, get a second opinion. But you have to be prepared that this might be something they can't fix.

Dd1 has a turned eye, I'm on my phone at the moment so can't respond properly but I will when I get home.
Feel free to pm if you want.

One of my nieces had a turned eye and regular use of an eye patch helped to correct the problem though it did take a while.

Ok, A lot of drs won't do surgery on children under 10yrs for eye turns anymore. From what our dr has told us, if they do it too early, take too much of the muscle off then the eye can swing the opposite way and then it cannot be fixed. Also it is deemed to be primarily domestic surgery, in that fixing the turn will not fix the eyesight.

DD1 is 6yrs she has a turned left eye. Her eye sight in that eye has gone from been legally blind to driving eye sight level (which is what the drs aim for, I think its 6 lines down the eye sight chart). We have our next appt on monday and Im interested to see where her eye sight is at the moment. We currently patch her eye for 4hrs a day. The time we patch for daily changes as per her eye test results. We have also done behavioural therapy on her eye, and she wears glasses full time too.
I swear that her turn can disappear at times, in that when her brain recognises both eyes and processes what she is seeing, I think both eyes look normal. Her dr however tells me that the only way to fix the turn is surgery, and ideally he won't touch her until she is at least 7yrs. The resin for that is that children's eyesight conitues to change until they are around the 7 to 8yrs mark. Up until that point eyesight can be improved (or weakened) fairly rapidly. And thats how turns happen in that the eye sight generally lessens in one eye and the brain stops using that eye, so it weakens and turns.

At the moment dd1 has an appointment once every 3months, her eye sight is tested and we re-evaluate how long she needs to patch for. This next appointment though I am asking for the eye drops as well. They do not work as well as the patch, in that it only blurs her vision in her good eye compared to blocking the vision altogether. But the eyedrops mean I can put them in before she goes to school and no one will know the difference (well besides her teacher of course) as wearing a patch to school didn't go down last time very well, and dd is adamant that she never wants to do that one again.

fwiw, I have done the 'dr shopping' for dd in this instance. We have gone through 6 drs who I didn't have full trust in. Now we are under the care of the top dr in aus when it comes eye turns. I have gone to drs who wouldnt help us because we didn't have ph, I have gone to drs who wanted to do surgery immediately and no other therapy (which the studies have basically said is a really bad idea), I have gone to drs who told us there was no problem and dd would be fine. To get to the dr we have now, I begged and cried to get into the children's hospital program, then we were lucky enough to get the dr we have. Our current dr, does one day a week at the hospital and has his own private practice as well. I would be more than happy to go to him privately at the moment and we do wonder if it would make any difference, but we trust that he has her best interests at heart.

Thank you so much ladies, I really do appreciate all of your input. Others experiences with and without surgery is what I've been really needing to hear. Earlier on (maybe when he'd had his glasses for only a few months he had a patch and I think it was for a 3 month period for about 3 or 4 hours at a time but when we went back for the follow up with the behavioural optometrist she wasn't happy with the results and didn't continue. It hasn't been mentioned by the specialist we saw earlier this week. I do remember her mentioning (behavioural optometrist) the drops at a similar time of the patching but we were never prescribed them.

Beansbeans thank you, it's great that you've found someone you can trust. The first specialist we went to told us to go and get him some +1 glasses from the chemist and come back in 6 months. There was no way we were ok with this and therefore ended up at the behavioural optometrist we see now and through her we found out so much more about his vision complications (no one had mentioned that his eyes were failing to work together before then) and he had a prescription specifically suited to his needs before those 6 months were up. I was so angry with the other lady I really should have written a letter of complaint. So having people like that out there that are considered to be 'specialised' in their area can make it hard to know when you can really trust someone. Are you in Melbourne? I really wish you all the best with the continued treatment of your daughter.

Trillian you too have explained so much more in terms that I understand than any of the doctors I've seen. Thank you so much. I do wonder if patching should have been pursued a little longer with the positive results you talk about. I do have trust in this lady because as I said above once we got to her real treatment of his eye began (we were much more proactive in trying to deal with the turn/vision through her) but at the same time I'm cautious. I have heard that the surgery isn't always successful and that I definitely don't want to be putting him at unnecessary risk.

Thanks so much for your help ladies you have helped me feel a little more at ease, i'll have a chat to my DH and even read your replies out to help him understand :)

EJ, unfortunately not, we visit a children's hospital in Sydney.
Honestly I'm surprised they stopped patching so quickly, from what we've been told the older they get the slower the change but the change will happen with consistency.
When dd was 2yrs we visited an opt for her eye, the advice we got was to put pictures on the wall then lay her down with her weakened eye nearest to the wall. Apparently the expectation was that she would lay there and use her eye to look at said pictures. We laughed that dr off, saying she obviously didn't know the difference between a newborn and a 2yr old. Sadly this particular dr was the child behavioural optho for our area.
Another dr told us that because in his opinion we couldn't afford the surgery there was no point in him putting dd on his waiting list. :wall:

My left eye turns (severely), has since birth. I had several operations in infancy to correct it, and they all failed.
My eye still turns out, and no amount of patching or exercises has ever changed that. You can temporarily control it, but my eyes do not work together. I have little grasp on depth perception - the only thing this effected was my tennis game and joining the air force. The exercises do have a measurable impact on my actual script though. (Also assuming you have discussed prisms in his glasses with the optometrist?)
I do get funny looks, and a lot of grief at school, but in the end, it honestly has no real impact on my life. I have other issues with my eyes, so I have worn glasses literally all my life.
Keep persisting with the patching, the exercises, but don't let it become a bigger deal (aesthetically speaking) than it actually is. The only time I am ever self-conscious of it, is when people keep going on about it and trying to 'fix' me.

Just a perspective from the other side. Good luck.

beans beans, from reading your experience and others i'm also surprised and wondering why she stopped with patching after such a short amount of time :dunno:

LimeSlice, i really value your opinion. At this stage DS's eye turn is of no issue to him emotionally, it really is more mine, DH's and a few others who are concerned about it at this stage. He is a 7yrs old, carefree and really quite confident little boy so we really couldn't want for anything more.

I do have trust in the professionals we are seeing at this stage and until otherwise i think i will go with what they are recommending. I had a voice message today from the Behavioral Optometrist and she has just said we can drop in when when we can to organise new glasses with the lenses in them. All i can do is get this sorted and see how he goes in the next few months.

Thanks for your input ladies :)

Dd1 is long sighted and has a turn it was there from birth but only when she was tired at first but st around 3.5 it turned permanently. She is seen by an ophthalmologist who decided not to patch but to use glasses instead as it corrects her vision and stops the turn. As she is growing her eyesight is improving and now it's harder to get a balance between dd being able to read and stopping the turn. It doesn't bother her at all, she loves her glasses too as they have Snow White and are pink. No one teases her so far. We will have the surgery if it doesn't correct itself but her specialist is pretty sure it will correct itself at about 8 or 9 along with her eyesight. With ds we noticed a turn at 18 months this time we got onto it straight away, he went straight into glasses, he is long sighted too but we managed to stop the turn in his eye.

Thanks black-rose, all the best for the next few years with both of your children regarding their eye turns. Hopefully we'll see improvements over the next few years :)