As you may or may not recall, Spencer had surgery to correct "alternating esotrophia" January 2003. The Ophthalmologist stated that people with Neuro issues tend to have recurring eye muscle issues.

His eyes have been great since then. I noticed recently as he is learning to read that sometimes he holds the paper close to his face. Ok, so he may need glasses, no big deal.

This morning I was talking to him and noticed that while his right eye continued to look at me; the left eye "floated upwards to look at the ceiling".

Kevin's left eye kind of does that when he gets tired. Kevin had surgery to correct crossing when he was 5 yo. I don't know how old Kevin was when his left eye started doing it's own thing. He doesn't remember. I sent a note to my MIL asking.

I haven't ever seen him do this. When he has an eye rolling seizure, they both track upwards together. I wouldn't think this was a seizure.

It is 3.5 years since surgery. That is a really long time for the brain, eyes, and muscles to decide to go wanky, isn't it?

Your thoughts? Your concerns?

We have a follow-up with the Ophthalmology Oct 31st.

I think it's difficult for any of us to take guesses Bec - but I do know that even if you have the same genetic makeup/eye issues, things can vary widely over the years. My (identical) twin and I were born with a squint and short-sightedness (and related 'lazy eye' developed).

However, whilst her brain has continued to have the 'lazy eye' input switched off (back in those days, they were less proactive with surgery), mine 'switched on' with the lazy eye in my teenage years, causing eye strain which worsened the squint (although as the dystonia kicked in at that point, it's hard to say after that).

It could just be a growth issue - sometimes squint surgeries do need redoing (for various reasons). I'd bring it up with the Opth., but from what I remember Spency doesn't have major fluctuating tone, so it's maybe more likely to be a growth issue.

Also, some parents don't actually notice that their child has an intermittent squint until they start reading/doing close-up work - seems to be more obvious after the muscles have been working hard (talking NT children here).

HTH and good luck,
Swift
PS just found this link: http://www.patient.co.uk/showdoc/23068827 - could even 'just' mean that he needs glasses.

sounds very familiar to me. my DD had her first strabismus correction just before turning 3 yrs of age, the next just under 2 1/2 yrs later, the next 3 yrs later. ( None in the next 8 yrs.) Her second surgery I think was to correct one eye going up and the other out. maybe it was the third surgery. But it was a long time in between.

your description sounds just like her wandering. she's not seizure prone.

also, as you may already know....the eyes which do okay most of the time may tend to wander when the child is tired (as you've noted in Kevin) or when they are not wearing their glasses.

I had eye correction surgery like 10 years ago, after wearing a patch on my right eye for ages. In videos when I was younger, I used to squint severly. My left eye is okay, but my right eye 'looks out' as in it doesn't look straight, it's like lazy which is why people often wonder who I'm looking at when I'm actually talking to them, they look behind them because that's where my right eye looks at. So I guess my right eye muscles like to do their own thing.

I hope that Spencer's appointment goes well.

I think you should call the opthamologist.

Tom had strabismus and we patched for over a year and a half. At that point, we were "maintenance patching," meaning we patched one eye for 1/2 hour and the other eye two days later (we did a Mon, Wed, Fri deal). Once he got glasses at 2 1/2, I thought we were all done with it.

About a month after going gluten-free, I noticed Tom's eye going OUT! I called the opthalmologist's office because our original instructions from loooong ago were to call for any changes. She said remove his glasses and wait for his appt in 1 1/2 months. We waited for a bit, but the eye continued to go out, so I began patching. (After not having been patched for a few years, Tom really hated it.) At his appt, the opthalmologist said that growth spurts include the head, which includes the eyes, which changes his vision. Two months later, I took him to his optometrist appt. She said quit patching and gave us a lower lens prescription. A follow-up with the opthalmologist gave us yet another prescription. We go back in a few weeks for another follow-up. (And, I think the eye is starting to go out again. Ugh.)

Anyway, I don't know what the answer is, but we're seeing changes, too. After Tom's next blood draw, we're increasing his vitamins and minerals and I'm wondering what that will do for his vision. (Another set of lenses in two months?)

Oh, and our opthalmologist said she tries to wait as long as possible before doing surgery on neurologically impaired kids. I'm not expecting any surgery for Tom.

Hope this adds to your confusion. What are you doing with Spencer's diet these days?