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?

Thanks for all the input.

I haven't seen a repeat since the first time on Friday. I know what I saw but have been second guessing myself. Anyway...

Knowing that is in't uncommon for this to reoccur is a bit disheartening. I had hoped that after he made it a year, then 2, then 3 that we were "out of the woods" with his eyes doing wanky things. sigh...

Such is life.

Regarding his diet... I have been bad. I have been arguing with myself over the hassle of yet another child and food issues. It has been very handy that Trevor can now make his own lunches. I have been making Spencer's lunch for 5.5 years. It has been a nice vacation not making his lunch. So, I have been really selfish with that.

Even after our discussion a few weeks back about diet can bring out the seizures.

I can make all kinds of excuses about Kevin's surgery, life care planners (and what they want), appointments for all his durable equipment, lawyers (and what they want), etc, etc, etc.

The reality is that I have been really mad about having to do another diet thing with another person in our house.

This weekend, I was looking at Spencer and noticed the very dark circles under his eyes. I know that is a "sign" of allergies.

I also know that 3 weeks ago our Minister asked what was going on with Trevor. She said, "He needs something but I don't know what it is. I'm wondering if he needs to be seen."

Kevin and I realized that we had gotten lax on his diet. And with Kevin's surgery, we had asked Trevor to pick up where Kevin couldn't. That is a HUGE amount to ask from a 9 yo. So, we locked back down his diet and focused more attention on him. Our Minister told us today that she noticed a big difference in Trevor just 1 week after our changes.

Sooooooo, excuses, excuses, excuses just don't get things done.

So, I am going to go make Spencer's lunch for school tomorrow. One day at a time... Be a responsible parent and make my child's lunch. I am being such a rebel.

Do you think diet could make his eye go wanky, too?

This was me, too. Tom got glasses at 2 1/2. He'll be 6 in November. We started gluten-free mid-February this year. We weren't fully GF until.... mid-March? (It was getting GF vitamins that was the "final" stage.) I remember not long after going GF, he was taking a bath (with no glasses) and he looked up at the ceiling. His eyes used to always go in a smidge when they were looking up. They were sooo straight looking. I remember staring at them, fascinated. (Probably what you did when Spencer first had surgery.) I was originally told that the glasses were just to straighten his eyes. They seemed to do sooo much more, but that's why they were prescribed. So, if the glasses were to straighten the eyes, and going GF helped his brain straighten them, does that mean the glasses are now pulling them out? (I'm not really asking you, but this is what I've been wondering myself.)

The other thing with some of these allergens (dairy, gluten, and other biggies that are consumed daily), is that they affect the absorption of vitamins and minerals. So, is it the allergen? Or just the lack of certain vitamins and minerals in the bloodstream causing the problem?
So, yeah, I guess I do think diet can affect it. I've also noticed "side-effects" of Tom's vision since going GF. He doesn't seem to run like a toddler anymore, in the sense that his legs are not spread in a wide stance (in the shoulder-to-shoulder direction), although he still runs very slowly. He's judging steps better, especially when he's running (running across the street, and jumping up the curb). And, he's actually jumping a little bit while running (instead of tripping over the uneven sidewalk). He doesn't fall as often.
I'm not trying to give you a hard time, either. I completely understand what a pain in the rear it is. I'm still feeling overwhelmed from our GF decision, and wondering why I volunteered to teach Sunday School, and why I joined that church committee and now have a three year commitment. We used to eat out for supper every weekend and that was the HARDEST to give up. Cooking on weekends?!?! If it helps you any, I'm trying to cook double for supper at night, so that we can eat the same thing for lunch the next day. When I'm really on top of things, I even put Tom's lunch in his Tupperware container while I'm putting the rest of the leftovers away so that it's ready to go in the morning. (It doesn't happen as often as it should.)

I'm glad you're going to make his lunch tomorrow. (Misery loves company, and all that.) Given your allergies and his history, I think messing with his diet will do a lot of good. Go, Bec! Go!

I know you weren't giving me a hard time.

I was giving myself a hard time.

I can't tell you how many times I have talked to people about allergens when it is CLEAR that the issue they have at hand is an allergy issue.

Let me tell you, Denial is more than a river in Egypt. I have been so frustrated at times with people that moan and complain about this issue or that issue but refuse to do something simple like remove a food from their diet. They would rather complain and deny that food has anything remotely to do with it.

- I decided this example was way to inflammatory, deleted. -

The one I love the most when I talk to someone about milk allergy that has every single milk allergy symptom that I have. "I don't drink milk." Then I find out they eat cheese and ice cream every other day.

So, my annoyance towards my laziness with Spencer and the food issues was more annoyance with my own hypocrasy. How dare I have the nerve to get annoyed with other people and their denial when I am NOT in denial. Just flat out not wanting to do it anymore. I have been dealing with my own food allergies for 7 years.

So, it wasn't at all you. You just held up a mirror for me to look into.

And, I made Spencer a hotdog sandwhich, Frites, and applesauce. All the same foods that I would feed Trevor. Actually, Trevor got the same lunch.