AimeeM Posted September 1, 2016 Share Posted September 1, 2016 (edited) DS7 had a regular eye exam today. A couple months ago my aunt had noticed that DS' eye appeared to be turning outward. He had always had regular eye exams, with a ped's specialist op (because of his other medical issues), so I didn't think much of it. Honestly, I didn't really see it. But, the doctor today noticed it immediately and seems concerned. She's contacting is former doctor (the specialist) to ask for his notes. She doesn't think it's likely that he noticed it and didn't say anything, which leaves the concern that perhaps it's a sudden onset. Apparently that leaves more room for concern, although the doctor is being vague about her concerns (outside of that they're there) until she speaks to the specialist. Anyone have a kid who had this problem occur somewhat suddenly at a "later age" (because apparently it's rare to see so suddenly after the age of 4) - and it turn out to be nothing major. "Nothing major," at this point, would be nothing that a small corrective surgery or something fixes, lol. ETA: they can't correct the vision and astigmatism with glasses until we have a plan for the "turning eye". Apparently doing so can make the turning eye worse Edited September 1, 2016 by AimeeM Quote Link to comment Share on other sites More sharing options...
Miss Tick Posted September 1, 2016 Share Posted September 1, 2016 Sympathies from a mom with the in glasses from early ages, the not knowing is so stressful. Quote Link to comment Share on other sites More sharing options...
wapiti Posted September 2, 2016 Share Posted September 2, 2016 (edited) My only thought is that if it turns out not to have any scary cause, after you pursue the medical angles, you might also run it by a COVD for their thoughts. ETA, ocular motor issues are not at all uncommon among people with other sensory/motor/nervous system issues. Edited September 2, 2016 by wapiti Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted September 2, 2016 Share Posted September 2, 2016 (edited) My only thought is that if it turns out not to have any scary cause, after you pursue the medical angles, you might also run it by a COVD for their thoughts. Yes. DS had one eye that sometimes looked a tad off if he was fatigued but his visual acuity was perfect so he passed every eye exam until we went to a COVD just this year. Convergence insufficiency, ocular motor issues, etc. Glasses won't help him since acuity is fine. Vision Therapy should, though. Edited September 2, 2016 by OneStepAtATime 1 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted September 2, 2016 Share Posted September 2, 2016 (edited) DS7 had a regular eye exam today. A couple months ago my aunt had noticed that DS' eye appeared to be turning outward. He had always had regular eye exams, with a ped's specialist op (because of his other medical issues), so I didn't think much of it. Honestly, I didn't really see it. But, the doctor today noticed it immediately and seems concerned. She's contacting is former doctor (the specialist) to ask for his notes. She doesn't think it's likely that he noticed it and didn't say anything, which leaves the concern that perhaps it's a sudden onset. Apparently that leaves more room for concern, although the doctor is being vague about her concerns (outside of that they're there) until she speaks to the specialist. Anyone have a kid who had this problem occur somewhat suddenly at a "later age" (because apparently it's rare to see so suddenly after the age of 4) - and it turn out to be nothing major. "Nothing major," at this point, would be nothing that a small corrective surgery or something fixes, lol. ETA: they can't correct the vision and astigmatism with glasses until we have a plan for the "turning eye". Apparently doing so can make the turning eye worse OK - I was diagnosed with amblyopia and strabismus at a young age. the Ophthal who diagnosed didn't really care, and did NOTHING about it. (I'm angry at it's affected my vision my entire life.). . . . . . later, I was old enough to know what should have been done - but I was too old for it to help. just letting you know - your "specialist" may have noted it, and didn't care or think it was note worthy. eta: whatever is going on - it sounds like you have a good eye dr now. Edited September 2, 2016 by gardenmom5 Quote Link to comment Share on other sites More sharing options...
EmilyGF Posted September 2, 2016 Share Posted September 2, 2016 My daughter has really really really bad eyesight, and one eye is worse than the other. The doctor said that if we hadn't found it as quickly as we did, she would have developed a lazy eye and needed a patch. Emily Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 2, 2016 Share Posted September 2, 2016 A very sudden eye turn is very concerning. It was actually the first symptom of my dd's brain tumor. I share this not to scare you, but this is something I would go get a MRI done on in the next week. When we went back through photos we saw a hint about three weeks before and we saw that her eyes didn't reflect the camera flash equally. 7 Quote Link to comment Share on other sites More sharing options...
AimeeM Posted September 2, 2016 Author Share Posted September 2, 2016 A very sudden eye turn is very concerning. It was actually the first symptom of my dd's brain tumor. I share this not to scare you, but this is something I would go get a MRI done on in the next week. When we went back through photos we saw a hint about three weeks before and we saw that her eyes didn't reflect the camera flash equally. The doctor did ask if we had a neurologist among his existing specialists (he's seen one, but isn't currently under her care). Considering how unreliable his former eye doctor has been regarding getting records to our new eye doctor, I was considering speaking with our pediatrician and asking for a referral back to the ped's neurologist. Would that be paranoid of me? After the field of vision test came back fine, the eye doctor did seem less concerned, but considering her initial line of questioning regarding his neuro past... Quote Link to comment Share on other sites More sharing options...
Pippen Posted September 2, 2016 Share Posted September 2, 2016 I had one that I thought seemed sudden, but when we went back and looked through photos it actually was more gradual and had finally reached a very noticeable stage. We scheduled corrective surgery when he was ready. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted September 2, 2016 Share Posted September 2, 2016 I would ask ped to talk to the ophthalmologist, and push for some concrete answers. A little amblyopia/exotropia when nothing else is going on is not a big deal, relatively speaking.....some patching, maybe a little surgery, not big in the scheme of things. Possible impingement of the oculomotor nerves = huge freaking deal. Having a full field of vision isn't necessarily reassuring as in the early stages, full range of motion is still possible if the nerve is just being pressured rather than impinged upon. Quote Link to comment Share on other sites More sharing options...
calihil Posted September 4, 2016 Share Posted September 4, 2016 A very sudden eye turn is very concerning. It was actually the first symptom of my dd's brain tumor. I share this not to scare you, but this is something I would go get a MRI done on in the next week. When we went back through photos we saw a hint about three weeks before and we saw that her eyes didn't reflect the camera flash equally. I was going to say this, as well. Push for an MRI or at least a CT scan ASAP. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted September 4, 2016 Author Share Posted September 4, 2016 I would ask ped to talk to the ophthalmologist, and push for some concrete answers. A little amblyopia/exotropia when nothing else is going on is not a big deal, relatively speaking.....some patching, maybe a little surgery, not big in the scheme of things. Possible impingement of the oculomotor nerves = huge freaking deal. Having a full field of vision isn't necessarily reassuring as in the early stages, full range of motion is still possible if the nerve is just being pressured rather than impinged upon. This is going to sound way too complicated, but here it is. This was caught by optometrist. He DID have a ped's specialist-opthalmologist, but we moved from that practice. His practice is huge and notorious for taking for-freakin-ever to get back to anyone. The new eye doctor (optometrist) requested DS7's records a month ago... and after several calls, was finally able to get them - yesterday. I'm not happy that the optometrist has already said that she would have to refer back to that same first opthalmologist we used to see... I really do not like dealing with that practice, but apparently (previous eye doctor) is the only local specialist for this issue. If it's in the old eye doctor's notes that this existed before this visit, apparently things seem less urgent - although, then we have to wonder why he never mentioned doing anything about it, if it was noticed, as he IS the specialist in this particular issue, which doesn't exactly earn my confidence. If it isn't noted in any of their records, things are suddenly more concerning (because then this only developed a few months ago). Hopefully I can have his pediatrician push his old eye doctor to communicate with both her and DS7's new eye doctor a bit more quickly. If the pedi can't make that happen, hopefully she can just order and MRI herself to at least put to rest... well, any concerns that aren't relatively easy to take care of. Although I wish he didn't have a medical history, that he does sometimes makes it easier to get things done quicker. His doctors tend to be more cautious with him because of his medical history, which could certainly come in handy here. 1 Quote Link to comment Share on other sites More sharing options...
Starr Posted September 4, 2016 Share Posted September 4, 2016 Well, well, that's not a fun circle to go through. I hope it settles out quickly! Quote Link to comment Share on other sites More sharing options...
umsami Posted September 4, 2016 Share Posted September 4, 2016 Are you noticing any recent differences in vision? What did his exam show? Was there a sudden drop in quality of vision? I'm saying this because I had amblyopia and strabismus as a kid (surgery as well) and it was pretty obvious. I was bumping into things and such. I still have a weaker eye even though I had surgery rather quickly, and using a microscope is very difficult for me. (Hard to explain, but I can switch between my eyes....and my dominant eye tends to dominate.) How far away is the nearest pediatric ophthalmologist...ignoring the guy you don't like? Find an Eye MD: https://secure.aao.org/aao/find-ophthalmologist https://aapos.org/ IF there isn't a pediatric ophthalmologist in the area you like, what about a good general/comprehensive one? You may want to see if there's one with neuro-ophthalmology training as well. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted September 4, 2016 Author Share Posted September 4, 2016 (edited) I didn't think there were any choices outside of this one guy, but when I googled it, apparently the same Children's Outpatient Center DS sees his other MDs at, also has a ped's opthalmology department - so I could go with them. I like the other guy and think it's his practice that I have an issue with; not necessarily him. His quality of vision is "okay." Nothing that is a sudden decline. He needs glasses, which is the other issue, but he's been borderline (almost needing glasses, but not quite), for a couple years, so we expected them to finally say "yes." The doctor did say that she wouldn't bother to treat the farsightedness (which surprises me, as myself and DH are nearsighted, not farsighted) if it weren't for the astigmatism. She said, though, that she can't put him in glasses until we know a bit more about the eye turn and what we plan to do about it. Are you noticing any recent differences in vision? What did his exam show? Was there a sudden drop in quality of vision? I'm saying this because I had amblyopia and strabismus as a kid (surgery as well) and it was pretty obvious. I was bumping into things and such. I still have a weaker eye even though I had surgery rather quickly, and using a microscope is very difficult for me. (Hard to explain, but I can switch between my eyes....and my dominant eye tends to dominate.) How far away is the nearest pediatric ophthalmologist...ignoring the guy you don't like? Find an Eye MD: https://secure.aao.org/aao/find-ophthalmologist https://aapos.org/ IF there isn't a pediatric ophthalmologist in the area you like, what about a good general/comprehensive one? You may want to see if there's one with neuro-ophthalmology training as well. Edited September 4, 2016 by AimeeM 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted September 4, 2016 Share Posted September 4, 2016 My son had minor strabismus that no one bothered to tell us about. He is slightly farsighted, but reads 20/20 off the eye chart. The eye doctor finally said something about strabismus when he was about 9 or 10, and said "It's nothing." (Yeah it is! Lots of eye motor trouble and lazy eye runs on both sides of my family.) The place where they send glasses made a really big mistake in my other son's glasses, and the office didn't catch it (he could have gone blind in one eye), so we switched to a new practice with a COVD. My son with strabismus received vision therapy for convergence insufficiency, and the strabismus is completely solved. In our case, he had one of the shortest courses of VT they'd ever done. Far nicer than surgery, and he can do all kinds of things with his eyes that he couldn't do before (but we didn't realize). His physical coordination has improved greatly as well. Quote Link to comment Share on other sites More sharing options...
AimeeM Posted September 4, 2016 Author Share Posted September 4, 2016 I didn't think there were any choices outside of this one guy, but when I googled it, apparently the same Children's Outpatient Center DS sees his other MDs at, also has a ped's opthalmology department - so I could go with them. I like the other guy and think it's his practice that I have an issue with; not necessarily him. His quality of vision is "okay." Nothing that is a sudden decline. He needs glasses, which is the other issue, but he's been borderline (almost needing glasses, but not quite), for a couple years, so we expected them to finally say "yes." The doctor did say that she wouldn't bother to treat the farsightedness (which surprises me, as myself and DH are nearsighted, not farsighted) if it weren't for the astigmatism. She said, thought, that she can't put him in glasses, though, until we know a bit more about the eye turn and what we plan to do about it. ETA: They also said that his vision couldn't be corrected to 20/20. I'm not sure what that means or why. Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted September 4, 2016 Share Posted September 4, 2016 I don't know how good all neuro-ophthalmologists are but the one we dealt with who works at both a children's hospital and a university medical center was by far one of the most amazing doctors we ever met. He had great awareness of multi system issues which is something many specialists lack. He also was better at reading brain MRIs than the other neuro-specialists and neurologists we saw. Quote Link to comment Share on other sites More sharing options...
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