little four eyes

It’s long bothered me that some of the terms or phrases related to children’s vision are  inaccurate and sometimes even mean very different things, which leads to all sorts of confusion.  Here are the ones that I can think of, though I’m sure I’m missing others:

Squint

The one that trips me up the most is the word “squint.”  Until we started our journey with Zoe’s strabismus, I always thought squint meant having your eyes mostly closed, like you do when you’re in bright sunlight.  Turns out that squint is also a synonym for strabismus and having your eyes not in alignment.  This can lead to all sorts of misunderstandings when people talk about their child having a squint, or squinting to see something.  For instance, before realizing there were two definitions, at one of Zoe’s eye appointments, I tried bringing up the fact that Zoe squints one eye in the sun, that is, she closes one eye most of the way, leaving the other open.  Zoe’s ophthalomologist thought I meant that Zoe was crossing an eye whenever she was outside.  I now try to avoid this word altogether.

Zoe exhibiting two different "squints": eyes not aligned (left), and looking through eyes mostly closed (right)

Lazy Eye

The phrase “lazy eye” is similar in that it can mean different things to different people.  I think most people in the eye care industry consider lazy eye to be a common phrase for amblyopia – when one or both eyes doesn’t see clearly even if it has no defects, or even if any refractive error is corrected with glasses or lenses.  Never mind that “lazy eye” doesn’t really accurately reflect what’s happening with amblyopia, since it has nothing to do with an eye being “lazy” and everything to do with the brain not paying attention to the visual input of the eye.  But beyond that complaint, a lot of people hear “lazy eye” and equate it with strabismus, since you see one eye focusing on an object and the other eye looking elsewhere (being lazy?).  And I’ve heard other people refer to ptosis (drooping of the upper eyelid) as a lazy eye, again, presumably because the droopy eye looks “lazier”.   Further confusing things is the fact that both of those conditions can lead to lazy eye or amblyopia, but they’re not the same thing, and the treatments can be very different.

patching for amblyopia

Strengthening the weak eye

Related to treating lazy eye is the phrase that I find myself using a lot: “strengthening the weak eye”.  When a child patches the amblyopic eye, we often explain that they’re doing it to strengthen that eye.   In reality, though, we’re trying to get the brain to recognize the visual input from that eye, the eye itself isn’t being strengthened.  It’s misleading in a couple of ways.  First, when people hear “strengthen” they often think muscles, and I wonder if that adds to the confusion of thinking that lazy eye has to do with eye muscles and strabismus.  It can also lead to the misunderstanding that patching might make it so that the eye won’t need any correction any more if the patching is successful.  While patching can improve the visual acuity, if that eye needs glasses to see clearly, patching won’t fix that.

and on a much lighter note

Finally, on a lighter note, a reason to know the correct terminology for parts of glasses was posted over at Not Always Right (a blog about working with customers who aren’t always right).  I’d recommend using the term “temples” or “ear pieces” when talking about that part of glasses, not “legs”.

Cyndi Lee left this as a comment this morning about her experiences as a child with a cataract.  She gave me permission to re-post it here.  Many thanks to her for sharing.  -Ann Z

This is my first time writing anything about my cataracts….  I’m now 41, but I was born with a cataract only in my left eye.  My right eye is still 20/20 (God is fair) and as much as I’ve joked to my doctors that they should use me in their thesis, no one takes me seriously.  For one, I know the difference between being legally blind vs 20/20 and I can EXPLAIN to the adult world the cons and pros.  So for those who are in need of some sanity for their child, read on.

A cataract is exactly like seeing objects underwater in a swimming pool.  You see the object and can identity but it’s not crystal clear. I also had a lazy eye – that comes with the territory with most cataract cases in early childhood due to the lack of muscle usage. I’ve had a semi-successful surgery only because I waited too long.  The procedure was not as advanced as it is today to fix the lazy eye syndrome related to cataract, but still I’m so grateful and happy for the surgery.  The early years, I had to wear the “pirate” black eye piece to school which I endured great ridicule from the students and from which I still have nostalgic scars, BUT my strong parental influence and my brother being next to me had made all the difference in the world.  Although in hindsight I would tell a “story” behind the patch, such as “my eye needs rest because I have extra vision like superman”….Something to that line to ease the ridicule…comedy is the best remedy. Encouragement and making sure the eye patch is “fashionable” due to the fact no one else has it makes it special!!  Having a degree in fashion has definitely made me realize that being different is the key!  It’s the love, support and encouragement the family shows that sketches out the future of the child.  My mother still carries the guilt as though she had done terribly wrong during pregnancy but I always tell her I’m blessed as I have a 20/20 vision on my right eye versus the astigmatism my brother has on both eyes.

I underwent a retinal detachment surgery 3 years ago, I went in for a normal checkup and went into the emergency room that night.  The damage was severe but the surgery was very successful. I did lose some sense of depth perception and some peripheral vision but my eyesight improved by one line on the chart which the doctor couldn’t explain.  No one had ever educated or warned me about the retinal detachment that are prone to happen to people with cataracts, so I would advise any parent to always remember to ask during checkup as their child gets older.  I did see flashes during the night while driving and spider web like floating around but thought it was just due to aging.  Don’t be alarmed as I still have a tiny “floater” after the surgery but I received results from two specialized doctors and they said it was fine.

The recovery, was tedious, boring and restless!  One must sleep facing down ( two weeks for me ) my mom and I’ve tried everything until we came up with a solution.  Bought a massage table with the open headrest from Costco and placed a huge mirror under me angled towards the TV so I could at least be entertained and now there’s iPads. The recovery is very important as one can lose their vision if not properly taken care. It is imperative after this surgery to always have a doctor’s visit at least once a year if not twice just to be safe.

Yes, we buy every cute glasses-themed T-shirt we see. Busted farmer's hat? Not a typical accessory.

Last night, my daughter experienced double vision. But panic soon gave way to reassurance. It was not a bad thing. Surprisingly, I haven’t lost my mind. (Though if I did, would I know it? Anywho.) Please allow me to explain.

Stella, whose vision I’ve covered here at Little Four Eyes before, just turned three. When she was 18 months old, her accommodative esotropia and anisometropia were discovered and addressed with glasses. Her stylish specs keep her eyes straight–HOORAY! We still patch a little bit, because her left eye is more farsighted than the right and so has slightly lower acuity (really, less than one line difference at last check). We’re finishing up vision therapy. Stella can catch a ball, now without using her chest to corral it. She can snag falling feathers with the grace of a major league outfielder, and hit a birdie with a racket, not so much with grace (yet) but with real and consistent contact. Her peripheral vision was opened up by the vision therapy, and her toe-walking reduced. She’s doing very well, and even asks to do our daily at-home vision therapy activities. Amazing progress all around.

Last night, when I heard her crying out from bed, I blamed the cold she’s been battling. I went in to comfort her and help blow her nose. As I leaned over her, I saw a dazed smile on her face. That’s when she said, “I see two mommies.” I looked more closely, and sure enough, her left eye was turned in. I so rarely see her eyes cross–because she almost always wears her glasses. The sight is still a punch in the gut, but I quickly put the pieces together and saw a big positive.

First off, she has a cold–the stress of illness is what brought out her strabismus out in the first place.

Secondly, she wasn’t wearing her glasses. Spec-free, all bets are off, particularly when she’s studying something up close. At least until age 11 to 13 or so, she’ll need glasses to keep her eyes aligned. The vision therapy helped re-wire her brain to always use her eyes, aligned by glasses, together. If her glasses were on and I saw crossing, only then would I have real reason for concern.

Lastly, and this felt like a big and helpful realization to me: She wasn’t suppressing the weaker eye. She saw double because she was trying to use both eyes as usual. If her weaker eye was being tuned out, she wouldn’t experience double vision. Typically, again thanks to her glasses, her eyes are aligned and work together, enabling great stereoscopy as recently measured by both her new ophthalmologist (who is wonderful) and her developmental optometrist (also super fantastic). It’s no wonder Stella found the double vision amusing and unusual. She’s used to two eyes in concert, not in conflict.

Upon further obsession (err, reflection), I was pleased with how she quickly articulated what was going on. Back when she got her glasses, half a lifetime ago for this three-year-old, she had a relatively good vocab for her age but obviously couldn’t describe her vision to me. She also refused to even look at the feather I held in my hand above her head, nevermind catch one. She’s come a long way!

All that said, last night was a good reminder about how crucial it is for Stella to wear her glasses at all times (sleep, bath, and swimming excluded). I’ll confess that sometimes, upon waking, she comes to our still-darkened room and hangs out in our bed for a bit, usually without her glasses. About time we made “glasses on!” the very first step in our day.

Now, if only she could effectively clean her glasses on her own. This cold is resulting in permanently smeared lenses! (Ew.)

Many thanks to Melissa for sharing her story about growing up legally blind.  I hope you enjoy it, and find it as helpful as I did.  You can read more of Melissa’s writing at her blog, Wisdom from the Other Side.  - Ann Z

I went through it all as a kid.  I had my first surgery at 18 months to correct my crossed eyes, my second at 5 years to try and correct a nystagmus.  At different points in my childhood I wore glasses, contacts and a patch.  Growing up legally blind never stopped me from pursuing my dreams.  For those moms out there raising legally blind or visually impaired kids, I want you to know that even though your child may have to work a little harder in other areas then sighted kids they are capable of doing anything, and being anything!

I was born legally blind with crossed eyes, cataracts, nystagmus and severely underdeveloped optic nerves.  My vision is only slightly correctable.  I’m nearsighted as all get out.  During eye exams the only thing I can see is the big E which makes my vision un-measurable.  My vision can be corrected up to 20/800 in my good eye, but with glasses I have to give up seeing anything up close for a small amount of distance vision.  A trade off that just isn’t quite worth it when I spend all day in front of a computer.

the author, at age 20 months.

Having been where a lot of your kids are now I want you to know that growing up, I never knew that I had a disability. I never felt different from other kids and I’ve always known that I could do anything I set my mind too.  I knew I had to do things differently than other kids, but what set me apart also made me special.  I can only imagine what it must be like to be a parent raising a legally blind or visually impaired child – but from the point of view of the kid it’s all perfectly normal.  I’ve never been able to read subtitles, or see the chalkboard from the front row.  I’ve always had a pair of glasses or a monocular with me.  My life isn’t any more or less difficult because of my vision, it’s just different.

I spent the entirety of my K-12 education in a regular classroom.  I did the same assignments and was given the same expectations as the other kids, with some modifications as needed; I was also given special Orientation and Mobility (O&M) instruction.  My O&M instructor taught me how to go grocery shopping, read traffic patterns and ride the bus – all the skills I would need to move out and go to college.

I truly believe that part of the reason I’m a successful adult is because of my vision. Not being able to see something was never an excuse for not doing it.  I might have to do things differently than other people, but it still gets done.  I know that I can do anything, and I have.  I earned a Masters degree, I work full time in a position of responsibility and best of all I’m the mother of a wonderful baby boy.  I’ve completely mastered my disability, and I’ve been able to turn it into an asset.

There are a lot of resources available to legally blind children, including tuition assistance for college.  Most states have a Department of Services for the Blind that offers vocational training.  If a legally blind child wants to pursue a vocation that requires a bachelor’s degree, the Department of Services for the Blind will cover part, or all of the tuition.  State departments for the blind also offer orientation and mobility instruction, equipment and a network of individuals in similar circumstances.  They are a wonderful resource!

To any mom who has questions about what did and didn’t work for me growing up, please feel free to e-mail me at Melissa@wisdomfromtheotherside.com.

This weekend, we had a family vacation to Disney World.  Although I had no interest in going to Hollywood Studios, the Beauty and the Beast Musical was of interest to Elliana, so we went.  It was fabulous, but what was even better was the 3D Muppet Movie.  No, it hasn’t changed since we saw it on school band trip in high-school and is still quite boring, but I didn’t really watch the movie this time.  I watched my four-year old sitting in her chair with those silly looking glasses reaching out to touch everything that came towards her.  SHE WAS SEEING 3D!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  My heart was so happy, that YES, the Muppet Movie made me cry!

Zoe went in for her  first appointment since she started patching.  She’s been patching 4 hours every day for 7 weeks.  She’s certainly told me multiple times that she doesn’t want to wear a patch, but to her credit, she’s worn the patch every single day without fail.  I was hoping we’d see some progress at the appointment, but I’d be lying if I didn’t say I was worried.

This time she read the charts with no hesitation, with both eyes.  Just 7 weeks ago, I’d watched her struggle to identify the shapes when she had her left eye covered, but there was no struggle this time.  Even better was later when her ophthalmologist put the polarized glasses on her and showed her that picture of the fly where the wings look like they come out of the picture.

“Can you see the fly’s wings?” asks the ophthalmologist.

“Yes!” says Zoe.

“Can you pinch them?”

She reaches above the picture with her hand.  “No, actually I can’t,” she says, clearly puzzled by the whole thing.  I almost cried.  And we try to explain what’s going on, and why it’s a good thing in words that a 4 year old would understand.   Then the ophthalmologist asked Zoe to look at the animal pictures on the other side of the test.  All of a sudden Zoe started excitedly talking about all the different parts of these different animals that were coming off of the page.  Crazy!

We’re going to try tapering off Zoe’s patching:  2 hours per day for the next 2 weeks, then 1 hour per day for another 2 weeks, and then a follow up exam 2 weeks after that.

I’d love to say that there was something that we did these last 7 weeks that was the key – that there was some quick tip or trick I could pass along that would cure every child’s amblyopia.  But I want to be clear: we were extremely lucky.  Yes, Zoe did a lot of work with the patching, and I’m so very proud of my girl for doing it, day after day, at school, at church, even at birthday parties, and even though she often told me she didn’t like it.  But I’ll reiterate, we were lucky. Zoe’s amblyopia was mild to begin with, I didn’t catch what her acuity was in her weaker right eye when we started patching, but it wasn’t awful.  Good enough that she could pass a vision screening at her pediatrician’s visit without triggering a referral in any case, which means better than 20/40.  But since she’s been seeing the same eye doctor for over 3 years, her doctor saw her right eye’s acuity had dropped since her last visit 6 months ago, and had us start the patching right away.  So it was mild, and caught early.  And the fact that her bad eye wasn’t that bad meant that while patching was not fun, she could still function relatively well with her good eye patched, which no doubt helped with compliance.

Elliana and I were asked if we would review the book Hoppity Frog Has Two Clever Eyes, by Hazel Kay, illustrations by Joseph Kay, a product of www.kayfunpatch.com.  It is a cute little rhyming book geared for pre-school and kindergarten age children that tells the story of when a little frog named Hoppity gets glasses and begins patching.  Hoppity can’t win at playing catch the flies and when a lady comes to check everyone’s eyes,  Hoppity can’t see them and his parents take him to  the optician, orthopist and ophthalmologist.   He is told he has amblyopia and will need glasses and a patch.  In the end, his amblyopia goes away and he is not wearing glasses anymore.

The illustrations are simple and cute.  Elliana was excited to see that the pages were in black and white for her to color and immediately began coloring it as a gift  ”for a friend who wears glasses.”  I thought the concept of a coloring book / learning book was great and I wish there were more of these available for parents. (Elly’s coloring of a page below)

Although I love this concept, I did however change the wording as I read it to her.  This book actually hit me hard and made tears come to my eyes.  (I read all books myself before reading them with my children) It is supposed to be a cute story about getting glasses, but in all 17 pages,  Hoppity only wears glasses on 3 pages.  In the end, he has clever eyes, and NO glasses.  My baby will always have glasses and I consider her to be one of the most clever children I know.  Also, it is my personal opinion not to use the word lazy.  In no way shape or form would I ever use that to describe my child and I have chosen not to use the term “lazy eye”  with her.  We use strabismus and amblyopia.  She has worked to hard with patching 6-12 hours a day for almost 2 years and has gone through 2 surgeries and their recoveries to be considered lazy.  I do so wish they would not have ended it with his glasses laying on the ground and his Amblyopia gone.  My daughter will always need glasses no matter how good she is at patching. Due to the author’s choice of ending, I have removed the last few pages of the book and ended it at “Hoppity thinks his glasses are cool.  He is excited to show all of his friends at school.”  We can now enjoy the book and I feel better knowing that it goes along with the message I want to send to my kids about glasses and patching.

If your child has amblyopia and/or strabismus, you’re going to want to check this out: ”Do You See With Your Eyes Or With Your Brain and … What Difference Does It Make?” on The VisionHelp Blog.

I know about it thanks to Stella’s developmental optometrist, who emails relevant vision-related news and helpful educational opportunities and resources to her patients and colleagues. Tonight she shared a link to an engaging discussion between Dr. Press, a developmental optometrist and Board Certified Fellow of the College of Optometrists in Vision Development (COVD) who contributes to The VisionHelp Blog, and Dr. Granet, a prominent ophthalmologist. Really! They communicated with each other! And did a wonderful job of it, too. Though some of their chat is very expert-level, and therefore hard to follow, I was able to glean interesting points and find references to studies worth checking out. Hope it’s helpful to someone out there!

Dr. Press’ review (on The VisionHelp Blog) of Dr. Granet’s appearance on TV’s “The Doctors“ sparked this online dialog. Dr. Granet should be applauded for taking the time to respond to the (relatively mild) critique of his comments on amblyopia treatment, along with the optometrists who continued to engage him diplomatically yet honestly. You may’ve seen the video segment from the show, in which Dr. Granet tests a young toddler  for vision problems due to a family history of amblyopia. I really felt for the mom and dad, who found out in front of a live audience that their child likely does struggle with her vision. I remember that moment hitting me hard in the privacy of a small exam room. But as pointed out by “The Doctors,” early detection is something to be thankful for, and they’ve got it on their side.

In the comment section you’ll find an interesting conversation in which the disconnect between ophthalmologists and optometrists is taken on directly and in a very civil fashion. I couldn’t help but chime in (possibly coming across like a hysterical idiot parent, but hey, I tried!) and I hope you will, too. After all, it’s been talked about here on Little Four Eyes frequently. The lack of clarity many of us face in making decisions about our children’s care would be alleviated greatly if the two fields could find a way to collaborate or at least communicate. This comment section interaction seems like a step in the right direction. Stella’s doctor thought it was great and I agree.

One last time, here’s the link to the post and ensuing discussion:

Do You See With Your Eyes Or With Your Brain and … What Difference Does It Make?

(P.S. The video seems worth sharing, if only to convince other parents that eye exams are a great idea for all little ones and to show them how accurate testing can be even on babies as young as six months.)

The Treat Game: Stella's baby helps find matches during vision therapy at home

Stella’s developmental optometrist views patching as a first step in amblyopia treatment. Patching (in our case, Magic tape over the lens of the stronger eye) boosts the acuity of the weaker eye. Stella’s lazy eye is growing stronger, and vision therapy is more and more focused on training her eyes to work together for strong binocular fusion, in an effort to encourage stereoscopy, prevent or minimize regression and provide a lasting fix.

Stella’s daily patching time now feels pretty turn-key, even though (as is my nature) I do it on the fly. She does a solid hour, at least, first thing in the morning, kicked off by some video watching. Sometimes it says on and patching is done by late morning. Sometimes patching is completed in two or three chunks. I seize opportunities strategically. If she’s engrossed with a toy that demands a ton of hand-eye coordination, I’ll throw on her patch to give her amblyopic eye a workout. We’ve got patching down! Vision therapy? Or more accurately, getting 20 to 30 solid minutes of vision therapy done at home? Still a challenge. But as her weaker eye improves, the nature of  her vision therapy is changing. The latest exercises seeming to provide more improvement bang for our frustration buck. So we’re trying harder than ever.

Ever since Stella’s vision therapy progress evaluation which showed great gains, we’ve been doing a bit of what Susan Barry discusses on page 150 of Fixing My Gaze: monocular fixation in a binocular field (MFBF). This means that instead of being completely excluded via the patch, the stronger eye is merely put at a disadvantage. Her dominant eye is still able to receive and contribute visual input, allowing the eyes to work together, but the amblyopic eye is forced to do the heavy lifting. Several doctors/researchers, over several decades, have endorsed the effectiveness of this approach (Brock, Cohen and Hess for starters). Our experience with MFBF is limited but growing.

Almost every day, Stella dons a green-tinted patch over her strong eye and watches a video on our TV, the center of which is covered by a transparent red sheet. Her strong eye can’t see what’s in the red area thanks to the green tint, but it can still see what’s going on the periphery. In order to take in all the action and view the complete picture, her un-patched amblyopic eye has to pick up the slack and garner what is usually the most important part of the scene (whatever is centered, like close-ups of facial expressions, etc.). Her eyes are working together but her weaker eye has to perform at a higher level, setting the stage for binocular fusion. This work counts as patching time, so hooray for that!

Read more…

After a couple of weeks of wearing the Ortopad patches that we got from the doctor’s office, Zoe asked for patches that were a bit “sparklier.” The doctor’s office only had the boy patterned patches, which are actually pretty cool – space ships, and pirates, and airplanes – but still, she’s the one wearing the patch, and if it’s sparkly patches make patching easier, well then, sparkly patches it is. I bought a pack of the Ortopad Elite, which have glitter accents. She loves the patterns, but WOW are those patches sticky. I wasn’t sure I’d be able to get the first one off her face at all, and she was really upset with how much it hurt. We ended up trying a few things, including me putting the patch on my hand first to try to get some of the adhesive off before putting it on her face. But what seems to work best so far is for me to put a fairly thick layer of moisturizer around her left eye before putting the patch on. It keeps it from sticking quite so strongly, though it’s still staying put.

I can’t help but imagine Zoe 40 years from now noticing that her left eye has far fewer wrinkles than her right eye and wondering why.

Edited to add: I should add that Amblyopia Kids had a good article recently about stickiness in adhesive patches that’s definitely worth a read.