My nearly four-year-old daughter Isabella has multiple ocular diagnoses: severe hyperopia (farsightedness), astigmatism, mild macular hypoplasia (“underdevelopment of the macula, a small area on the retina responsible for seeing in detail” – read more) , latent nystagmus (“involuntary rapid movement of the eyeball, occurring only when one eye is covered” – read more), and intermittent exotropia (“eyes that turn outward” -  read more).  She began seeing an ophthalmologist at six weeks old and received her first pair of glasses at 15 months. Today at nearly age four, her acuity measures about 20/70 with correction. Isabella also has bilateral sensorineural hearing loss, childhood apraxia of speech (a motor speech disorder),  hypotonia (low muscle tone), and fine and gross motor delays.

Isabella

Isabella’s functional use of her vision has always been puzzling. As an infant and toddler, she could not seem to make eye contact, despite being otherwise a social child. She did not use a visually guided reach. Instead, she would glance at an object, look away, and then pick it up, feeling for its exact location. When she began walking, she was hesitant to let go of my hand and always stayed by my side. She avoided nearly all fine motor tasks, preferring interactive pretend play with her favorite stuffed animal Curious George and me.

In general, looking appears to be hard work for Isabella. She descends stairs without so much as glancing down at the location of the next step unless reminded repeatedly. She seems to navigate our entire home based on memory instead of sight. She frequently completes tasks such as getting dressed without looking. Her depth perception is poor. She prefers the familiar. When engaged in other demanding activities such as speech, Isabella sometimes takes visual breaks and looks off into space. Her visual performance is inconsistent; she is able to perform a task one day and not the next. She fatigues easily when engaged in the visual. Working on vision in a noisy environment is all but impossible. She is a master at avoiding activities that she finds challenging.

Thus far, Isabella does not have an overarching visual diagnosis that would fully explain her functional use of vision. Some have called it a delay in visual processing, and others suggest that she has some of the characteristics of cortical visual impairment. Perhaps some combination of neurological factors and her ocular diagnoses account for it. Perhaps it does not matter.

Isabella began seeing a teacher of the visually impaired (TVI) at 2 years and 8 months when I finally found someone—her  physical therapist—who took my concerns about her use of vision seriously. At her assessment performed through Early Intervention and paid for by the county, the TVI administered the following evaluations: Functional Vision Screening Checklist, Oregon Project for Visually Impaired Children, and Developmental Inventory of Visual Efficiency (DIVE). The results showed delays in visual efficiency and qualified Isabella for services twice per week.

Isabella’s TVI began to work with her at our home on a variety of skills, e.g., scanning from left to right, puzzles, searching for items in a cluttered picture, patterns, discriminating same and different, sorting, and matching. These sessions were very challenging for Isabella, since she had never had to focus so much on visual tasks.

Slowly we began to see some progress. First Isabella began to handle visual clutter more effectively. She started to scan more effectively to locate objects in busy pictures. She learned to do and even enjoy the simplest  inset puzzles and soon advanced to three and four-piece ones. A year later, she can complete a twelve-piece puzzle with limited assistance and eagerly tries new puzzles. She grasped the idea of patterns and discriminated between same and different. She could identify and name all her uppercase and most lowercase letters as well as numbers from 1-10. She could recognize multiple words in print such as her own name and those of her classmates and family members.

This summer Isabella reached the end of the road with her first TVI. He had approached his sessions seriously, almost academically, which became too much for our creative preschooler. He and Isabella were no longer a good match. Isabella’s performance during sessions tanked, and progress stagnated. After a few months of agonizing over this decision, we chose to seek a new TVI.

Isabella is again progressing with her new TVI, who has a much more playful approach. With a background in special education as well as vision, she has managed to incorporate pretend play, snacks, reading, and even breaks such as swinging into her sessions to maximize Isabella’s attention and motivation. Vision is now fun for Isabella rather than purely work.

Our new TVI has also suggested simple, yet revolutionary changes to Isabella’s environment to maximize visual performance. For example, Isabella now sits with her back to the window in our kitchen to minimize glare. We use a black cloth draped over the table for all close work to help Isabella see better and minimize visual fatigue. This new teacher has also visited Isabella at school, and we are working to integrate these and other accommodations into her school environment.

Since the start of vision services more than a year ago, I have observed a significant change in Isabella’s use of her vision. However, her work is far from over. Isabella still displays significant delays in visual efficiency, and her vision is far from typical. As she grows older and enters school, demands will only increase; visual tasks will only become more complex. We will persevere, providing her with appropriate accommodations and services for her education as well as presenting her with as many opportunities to use and improve her vision as we can in her daily life at home. I am certain that she will continue to amaze us with her progress.

I’m wondering if any parents of children with intermittent exotropia notice that their child constantly closes one eye in sunlight? Of all that we go though with Paris’s eyes, including patching, this for me is the thing that bugs me and bothers me the most. Especially as we live in Australia and it is always sunny!As soon as we walk outdoors she closes her exotropic eye, so she is closing it a large part of the day. I have tried sun glasses but she really doesn’t want to wear them. I am thinking of getting transition lenses? Has anyone got any advice on what to do? Is this something that can be rectified. It is really distressing to see her with one eye closed a good part of the day!

Here’s the thing, Zoe does the same thing, though she has esotropia, not exotropia.  Has anyone else noticed this with their child?  We’ve both asked our POs and not gotten much of an explanation.

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.)

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!

"Carl's Cards" as shown on bernell.com

In addition to the delight turning previously somewhat guilt-inducing TV time into a wonderful therapeutic tool, we get to play what has come to be known as “The Treat Game.” And no, it’s nothing like Candyland (until the very end). Four or five times a week, Stella puts on red/green glasses (essentially 3D glasses) and pick out ten to twelve matching pairs of cards (click here to see them at bernell.com) from a large deck. Think of it as an MFBF matching game. I spread out, all over the kitchen floor, one card from each matching pair. One by one, Stella pulls a card from the pile in my hand. She is tasked with finding its match on the floor, scanning the room to do so. The visual twist? In each pair of matching cards, one consists of a deep red background with a black shape–meaning only her red-covered eye can see the black shape, as her green-covered eye sees a completely black card with no shape. The other card from each pair consists of a white background with an orange shape–so that only her green-covered eye can see the shape, with her red-covered eye seeing a completely blank card with no shape. So in order to successfully match, Stella has to use both eyes equally. She can now handle a dozen matches without much trouble. It’s a bit taxing to wear these glasses and her two-year-old attention span doesn’t help, so I usually provide a small but very compelling treat as incentive for her persistence in finding all the matches. Hence “The Treat Game.” Much celebration ensues upon her 12th match. And two very small pieces of chocolate do the trick.

I feel a bit guilty. Stella and I have been travelling and I slacked on her vision therapy regimen–with permission, though we should’ve stepped it up sooner. But, I’m eager to kick vision therapy back into high gear at home, with some help that I am procuring (more on that in a future post). It’s definitely not easy, and we don’t always meet our daily goals. But Stella continues to progress, and as the type of exercises we do evolves, our commitment and excitement grows. Well, mine does anyway, especially in relation to another very fascinating and effective form of vision therapy that we’re doing, which I’ll share soon, once we gain a bit more experience and understanding.

With all this in mind, I keep our snack cabinet stocked with chocolate. No, not for Stella. For me! Sometimes a pick-me-up is in order, don’t you think?

(I blog about our journey at lifeandtimesofstella.com.)

My daughter has intermittent extropia. Her eye drifts outwards intermittently. We discovered it when she was about 7 months, but doctor said not to do anything about it then. We started patching when she was about 1 1\2 years; we patched only one eye (right eye) to make the left eye stronger. We did it for about four months. We went for a follow up in November 2010; she was 2 years by then. Doctor said, he sees the drift and he says he will have to do surgery soon. He also told us that her vision is fine in both the eyes. (20\20)

I really panicked, because though I see the drift in her eyes, I don’t see it all the time and I see it occasionally, maybe 5-10 times a day and it is different on different days. Whenever the drift is there, it stays for few seconds and she corrects it. Drift usually comes when she is looking at certain angle, I don’t see it when she is looking straight at things. So I was completely shaken when doctor said surgery is the only option.

I subsequently took appointment from 2 other doctors.

The second doctor told me that the drift is about 20-25 prism units, but he suggested not to do anything, he is very experienced and he told me to wait, according to him 1\3 of the cases stays the same, 1\3 gets better on their own and 1\3 gets worse. So he told us to keep a watch and I have appointment with him in April. (He also advised is against patching because he of the binocular vision). He also mentioned an interesting fact, that small kids have to look up at everything because their height is small, but as they grow everything is at an eye level and that helps in getting the drift better.

We went to the third doctor and he also mentioned that the drift is about 20 prism units.

He knew my first doctor and he said, he didn’t agree with him as far as the surgery goes, he said surgery is the last option and he recommended to continue patching and suggested pencil pushup exercise.

Now, I am a little relieved that surgery is off for now but am confused that there are different statements from different doctors. Am not sure if whatever I am doing is right, fear of something going wrong is always there.

Now I am patching the right eye for 1 1\2 hours and left eye for 1\2 hour alternate days.

We also try doing the Pencil Pushup exercise with her, we got 100 sticks from dollar store and we stick stickers on the tip and move it from back to front, she does it or few minutes and then looses attention.

Nintendo 3DS, expected to hit stores in March, comes with a vision-related warning

Jessica Gottlieb is a prominent blogger known for sharing strong opinions on motherhood, social media, and other assorted and engaging topics. Her son happens to have strabismus and amblyopia. He visited regularly with a pediatric ophthalmologist from age four months until earlier this month. Now nine years old, his vision has come a long way. He continues to wear an eye patch for a couple hours each day.

I thought the Little Four Eyes community would be interested Jessica’s recent thoughts on a piece of tech news: Nintendo’s 3D Gaming Device Comes with a Warning for Children Under Six. The soon-to-be-released gadget will come with a warning about potential injury to the eyes of children under age six, whose vision is still developing. Jessica has a valid concern about the device and its warning. The reason her son still wears a patch is because, at age nine, his eyes are still growing and changing (per the renowned doctors charged with caring for his vision).  So why does Nintendo set the cut-off age at six when we know that eye development continues beyond then? What is the real risk?

This area of concern seems likely to grow as gaming systems evolve without much regard to their impact on young eyes. As if we didn’t have enough on our parental minds, ay? Extra caution certainly seems warranted, especially when it comes our children with visual issues such as strabismus and amblyopia. Thanks for the heads up, Jessica.

Parents/experts, what do you think? How much do you worry (or not) about the effects of video games and emerging forms of 3D entertainment, and screen time in general?

My daughter is only two and her screen time is generally limited to 30-60 minutes of TV (age-appropriate videos) a day, only while wearing her patch as it helps with compliance to our regimen, but I know this will get trickier as time goes on. What guidelines do you have in place for your child? How have viewing/gaming habits and limits changed or become harder as they’ve gotten older? What have optometrists, vision therapists, or ophthalmologists told you about the impact of TV, computers and video games on your child’s vision?

Vision therapy: Skills and porcupine quills! Stella's first time wearing therapeutic prism lenses.

Last night and this morning, there was a nerve-wracking build-up to Stella’s check-up, wherein her developmental optometrist would gauge how patching and vision therapy have helped Stella, or not. I’ve worked very hard (okay, harder on some days than others) during Stella’s first three months of vision therapy, sometimes pulling my hair out, often swallowing pesky doubts, and occasionally guzzling wine. She’s 27 months old now, and has been such a trooper through glasses, patching and vision therapy. She asks to do certain “eye games” and requests her patch in the morning so she can watch a video (it’s her routine, plus there’s no TV watching without a patch). But she can also be impossibly resistant in that flippant, in-your-face way common to two-year-olds. And Stella’s not the only one with a short attention span! What was I talking about? Oh yeah–this isn’t easy, folks!

I’m proud of Stella regardless, but has all our effort paid off? As we headed out to the doctor’s office, part of me was absolutely certain that yes, her progress has been hit-you-over-the-head obvious and will be decisive and documented for posterity in the history books (or at least Stella’s patient records). But, I’ll be honest. Another part floundered and secretly wondered if we’d been throwing away hundreds of dollars each month.

The verdict: Stella has made solid improvement! Stella’s amblyopic eye is getting stronger and her eyes are working together more effectively. In August, when Stella was 24 months old and had been patching for maybe three weeks, her left eye was judged to be 20/40 [edit: found out at vision therapy that it was 20/80 before patching began]. Her right, 20/20. Since then, her left eye ramped up to 20/30, and her right is still 20/20. Other positive signs: During the exam, Stella’s eyes didn’t cross like last time. She showed much clearer evidence of 3D vision and binocular vision while wearing red/green glasses. These areas still need a lot of work, but Stella’s doctor and I see her first three months of patching and vision therapy as a success.

Stella and I, while riding the Santa Train. Happy holidays, everyone!

Until our next exam, the patching (two to three hours a day with tape on the lens) and vision therapy will continue, with new aggressive efforts added in so as to encourage Stella’s bossy eye to play nice. I requested that the office give me more exercises to take home, even if just for a week at a time, to keep Stella more engaged and to ensure we’re making the best possible use of our at-home therapy time. The doctor completely understood and agreed. She said that with a patient Stella’s age, you need six exercises at hand in order to ensure that three actually happen. She’ll be meeting with our vision therapist to discuss all of the above, of course.

In short, hooray! We saw progress! I’m pleased. But inexplicably, I feel a bit flat. I suppose it’s because there’s still so much hard work ahead. I knew that going in, but now it’s hitting me. Or maybe there’s this other little part of me, not previously admitted to, that was hoping for nothing short of amazing, miraculous results and 20/20 vision in Stella’s left eye. That’s the inner voice that gets me to persevere when, after Stella’s fifth evasive maneuver and tenth “no” of the afternoon, I feel like tossing the foam beads out the window and saying, “Screw it.” She’s tough. She gets me and Stella to those moments where new abilities are revealed, like when after much initial struggle Stella started loading up pipe cleaners with beads and scanning the room to quickly find hidden letters and smoothly snagging tiny bears off rotating discs.

That optimistic side of me has enough to go on, and will hold on tightly for another three months. Let’s hope I don’t go bald in the meantime.

(More about our journey at lifeandtimesofstella.com.)

My daughter was diagnosed at 20 months old and we have been patching since. She was also prescribed glasses a month ago, her prescription is +1.5 ONLY but our doctor says we should give it a shot to see if that will help straighten her eye. So it turns out that the prescription is so low that it does not help her “see” better at all so it’s been a struggle to get her to wear it. I’m just getting frustrated that nothing is helping her yet. She has been a trooper in patching and we just had another baby so there are so much changes in her world. I want to see if there are anyone here with a child in similar prescription and has seen a difference in straightening out the eyes or successful in keep the glasses on?

The chunky funky frames are a slightly higher prescription that we are trying to see if filling her whole script will help reduce the squinting.  Her left eye is looking straighter without having the muscles moved and her right eye is still healing!  The new muscle position is also helping with her academics.  The progress she has made with reading and writing in the last 3 weeks is amazing!!!!

Our early days of "tape patching." On vacation, sans napkins, apparently.

They’re not easy to spot, but if you look closely, you’ll find little ovals of Magic Tape jutting out from just about every surface in our home. Like an infestation of ghostly flat beetles, they peek out from door jams, edges of dressers and bookcases, and the side of our bathroom mirror. You’ll even discover them slapped to the dashboard of our car–because we take our occlusion to go!

For three to four hours a day, the right lens of Stella’s glasses is covered in a little patch of tape. I’ve been wondering if anyone else in the Little Four Eyes community is patching this way. I’ve never seen it mentioned, and have read here many times that doctors insist on the importance of full occlusion. At the risk of sounding controversial, I’d like to propose that 100% full occlusion, provided by the standard adhesive patches, is not necessary or “right” for every child with amblyopia. Stella’s story (so far, anyway) and solid research back up this premise.

Quite simply, translucent tape on the glasses lens over her stronger eye works for Stella. Her reaction to the adhesive-on-skin-style patch was so over-the-top. To me, it was heartbreaking and scary. She’d had an NG tube as a baby, a feeding tube that is taped to the face and goes into the stomach through the nose, so maybe old trauma was involved. Regardless, we all know that patching can be very trying for some kids and parents (though for some it seems to go quite smoothly), even without negative past experiences with adhesive! That said, I’m relieved to point out that Stella’s intense resistance is not why we patch with tape.

Backing up. When it became so very clear that the standard adhesive patch wasn’t going to work, I ended up rigging a simple foam patch–this “NoPeek Eye Patch” available on Etsy. I used double-sided tape to attach it to the inside of Stella’s glasses, after cutting it to fit better. She went along with this set-up amazingly well, and our problem was solved. But we wound up switching to the current tape method because it’s what Stella’s developmental optometrist (our third opinion, now our doctor of choice) prefers and suggests. The doctor explained that this way of patching lets light into the stronger eye, while still forcing the amblyopic eye to work more diligently and generally increasing the likelihood of full compliance to the prescribed patching regimen.

Again, I’m not suggesting that the tape method is suitable for everyone! I’m sure our doctor wouldn’t say that either. My goal is to simply highlight another option. As Stella has taught me time and time again, our little ones are all individuals and no way of parenting or patching or feeding or anything else seems to work for every child or family. And while I’m no expert, it seems reasonable to suggest that kids with really severe amblyopia may need total, absolute, no-light-of-day occlusion. However, I really wanted to throw this possibility out there for anyone struggling to achieve full compliance (patching for the full period of time required) with more traditional patches. Tape is a sound alternative, endorsed by our widely respected developmental optometrist, and supported by the results of a study of 84 ambylopic children, ”Optimal compliance for amblyopia therapy: occlusion with a translucent tape on the lens,” published in 2009 in the “Canadian Journal of Ophthalmology.” In short, notably better outcomes were achieved through use of tape, due to increased rates of compliance.

I bet you’re wondering, “But doesn’t she peek?” Sure, I have to say, “No peeking, sweetie!” to Stella on occasion. But I have bit of a system in place to help prevent peeking, and it’s made a huge difference. She gets 30 minutes of screen time in the morning, the main purpose of which is to kick-start patching. She knows that screen time means patch time. Period. For Stella, there is no watching of anything on a screen unless she wears a patch. And there is no peeking. If she peeks, it gets turned off. I just smile and say, “You know the rule: No peeking!” I never back down on this, and screen time/videos/TV is a compelling piece of leverage, so it’s been effective. By the end of her allotted screen time, she’s adjusted to the patch and we move on to vision therapy exercises (“eye games”) or other activities. As you all know so well, distraction is key. If she’s engaged, she doesn’t peek. She seems to forget all about the patch.

Long-term cooperation seems to be critically important for successful patching. To you parents of children who wear the adhesive patches as prescribed every day without constant resistance (meaning stints without the patch when it should be on) and battles, I recommend you do a dance of joy! And pat yourself on the back and pour yourself a glass of wine because, really, CHEERS TO YOU! In our case, the tape method helps secure cooperation, greatly decreasing the amount of conflict involved and increasing the probability of patching success. Stella’s showing improvement (as seen in her vision therapy sessions) and I trust our wonderful developmental optometrist, whose superb track record includes many patient success stories. Yet I have to admit that a bit of research gave me extra reassurance about tape’s effectiveness in treating amblyopia. With nagging questions and worries about Stella’s vision and treatment constantly poking at my brain, I appreciate any reassurance I can get. Something tells me you can relate.

Best of luck to all the other patching parents and kids out there. Whether using tape, foam, fabric or adhesive, I like to think of us as an extended family of sorts. A united force in the fight against amblyopia! I wish you peace and victory.