Strabismus

My seven-year-old daughter had strabismus eye surgery on April 4th.
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Our doctor told us she had a lazy eye when I took her in to be checked at at age four. My daughter has a mix of infantile esotropia, and accommodative esotropia. I grew up with parents who were very into health maintenance, and disease prevention. They believed in regular check-ups. So when I noticed my daughter was watching TV out of the corner of her eye, I worried. I’m glad I trusted my instincts to go see the eye doctor. We were sent to a strabismus specialist in Sacramento, Dr. Denise Satterfield. She decided that the best route was to treat the double vision with glasses. In addition to the strabismus, my daughter is far-sighted, as most kids are when they are young.

About a year later I joined a writer’s group. At the first meeting I met E. Marie Brierley – she has been living with, and dealing with strabismus issues her entire life. It is only recently that she’s been able to have doctors correct her vision. She is now an ardent supporter and champion for children and adults who suffer from strabismus. I count meeting her as one of those moments in life that were meant to be. She is a wealth of information, and I’ve been grateful for her time and hand-holding as we’ve worked to help my daughter.

There may be parents out there who are going through, or will go through, strabismus with their child. Below you’ll find an interview I did with my friend in the hopes that the more we informed we are, the less our kids have to endure before finding relief.

E. Marie Brierley is a survivor of over thirty years in the world strabismus created for her. She currently maintains a blog,Tornadoes and Red Shoes, discussing strabismus and its impact. Stanford Hospital & Clinics has profiled her medical journey in video and print. She is a public speaker, author, and a featured guest on “Free and Clear”, a Bay Area radio program. She is currently celebrating her new-found freedom of movement by developing a dance program for visually challenged children.

1. In lay terms, what is strabismus/lazy eye?

Strabismus is a misaligned eye, more commonly known as wall-eyed or cross-eyed, caused by the inability of the eye muscles to operate correctly. Lazy eye is sometimes confused with strabismus, but refers to amblyopia; a potential complication of strabismus resulting in progressive & permanent loss of vision.

2. What is your story?

Eye problems have plagued me since the age of 5, starting at the time I was diagnosed with a brain injury called third nerve palsy. Strabismus is one of its symptoms; I was wall-eyed. Unfortunately, a strabismus correction, at 14, didn’t go as planned, my strabismus became much worse and I developed severe double vision. My brain and my eyes tried to mitigate the double vision by contorting my body with compensatory postures which developed into a list of neurologic and orthopedic injuries down the right side of my body.

After over 20 years of searching for the correct medical treatment for many unexplained painful symptoms, Stanford Hospital was willing to listen to me and provide the coordinated treatment I so desperately needed. I’ve seen dozens of medical providers, just since February 2010, I’ve had over 100 medical appointments; including three surgeries.

Stanford Hospital has produced a video and written a story about my case, which is available on my blog, Tornadoes and Red Shoes.

watch?v=pRPtIf4RGto&feature=player_embedded

3. Why is getting medical attention so important for a child with strabismus? How does strabismus affect kids?

Strabismus is an architect and a mimic. It defines our physical world and that world isn’t friendly. My world was fractured. Objects disappeared between the gaps between my eyes. Movement felt like being hit, I wanted to bat everything away . . . or hide under the blankets. Like everyone with a severe medical challenge, I did the best I could, but I engaged with my physical world  very differently than those around me. Strabismus creates a constant state of anxiety where the world you know exists doesn’t match what your eyes tell you. New environments with new patterns of movement exacerbate this feeling.

What disturbs me most is learning how strabismus can mimic autism. I discovered this accidentally, describing the before and after my strabismus correction to a friend, who happens to be an occupational therapist treating autistic children. Strabismus occurs in 2-4% of the general population. Undiagnosed strabismus has been found in 27-50% of children diagnosed with autism (Kaplan, et al). I can run down the list of symptoms of autism and identify with a number of them – now gone, with my strabismus correction and my physical world is, most of the time, a unified, three-dimensional, stable place.

Eye contact: making appropriate eye contact with strabismus requires pulling a muscle. It can be uncomfortable or painful.

Disproportionate reaction to objects moved by someone: I engaged with my physical world through maps in my head, not directly. This meant I memorized every object and its relationship to other objects. I created programs in my head in order to perform tasks. When an object was moved, it no longer matched the maps in my head – destroying my first effort, and impacting my ability to perform a task. Moving an object an inch was the same as moving it to Tibet. This is also why I performed tasks the same way – by rote. Once I created a program in my head, it enabled me to repeat a task. Each task required the same degree of memorization and planning. You can understand how any change by someone else would disproportionately impact my ability to achieve.

Give me a labeler and bins and I’m a happy woman. I like things VERY ordered. That was a way to calm the visual cacophony created by my eyes and enhance my ability to engage using memorization rather than relying my unreliable eyesight.

Strabismus gave me the feeling of being constantly un-tethered. This meant I needed to lean on or touch something or sit in a corner to feel anchored. Sitting on an armless chair in the middle of a room was very de-stabilizing. I spent my later teen years sitting or laying in a corner of our living room, frequently with my L eye in the floor or my arm.

How long is this interview? I could go on: dislike of patterned clothing, facial recognition and keeping a head full of data to distract from visual “noise”.

It’s important to understand how difficult it is to describe the world strabismus creates for us. A number of us develop strabismus from an early age and have nothing to compare our visual input with. Until I experienced this amazing gift of after from Dr. Douglas Fredrick, Byers Eye Institute at Stanford, I would never have been able to describe my experience with strabismus.

4. What questions should parents ask doctors for their child?

Every child should receive a full eye exam before entering school. If your child receives a diagnosis of strabismus, it’s very important to follow up. According to the Children’s Eye Foundation, fewer than half of parents follow up on a referral to a pediatric ophthalmologist. It’s also a good opportunity for a parent to ask the pediatric ophthalmologist to use prisms giving them a tiny glimpse into the world their child lives in.

5. What types of therapy should parents be aware of?

Strabismus is treated with vision therapy, prism glasses, botox injections, occlusion therapy (patching) and surgery. One or more of these treatments may be prescribed by your child’s pediatric ophthalmologist.

Keep in mind any treatment is, quite literally, re-constructing your child’s physical world. It’s isn’t just a matter of seeing more clearly. Every time your child puts on or takes off their prism glasses, their world is changing structure.

6. What are the most pressing issues surrounding this eye problem?

Amblyopia is progressive and permanent loss of vision. My L eye was 20/200, legally blind, by the time treatment was sought. Thanks to treatment at Byers Eye Institute at Stanford, I have correction to 20/30.

Compensatory postures can be challenging to identify. Not all of us display them, they vary and they become more severe when we are engaged in visually demanding tasks or activities. The older we get, the easier it is to mistake them for voluntary bad posture. The longer we live with them, the more damage they can do to our bodies. Scoliosis is one of the more commonly written about complications of strabismus. Ocular torticollis can be a symptom of strabismus.

During my journey to the correct treatment, I was subjected to postural training for my ocular torticollis. It was one of the most frustrating medical treatments I’ve experienced. No matter how hard I tried, I couldn’t make my head stay in the correct position. My eyes and my brain kept forcing my head back to the torticollis position. This battle made my head turn in a semi-circular, semi-elliptical pattern and my chin would jut out. In contrast, my head and body positioned correctly immediately while wearing prism glasses. Most importantly my head and body have stayed straight for three years.

7. How can parents be their kid’s best advocate in treating strabismus?

The most important thing is to get your child’s eyes tested as part of a regular health check-up. Don’t take strabismus lightly. Do not leave your child in the unfriendly world strabismus can create. Obtain a second opinion and ask for surgical references from your physician, if your child requires surgery. If your child is engaging with their physical world differently than you expect, have their eyes checked and treated before embarking on treatments for behavior or posture challenges.

8. What are links, organizations can parents find online to help them?

The Children’s Eye Foundation is a great source of information, including their Little Ambassador program, videos about kids and their journeys to treatment. They are the national foundation for AAPOS, American Association for Pediatric Ophthalmology and Strabismus. A mouthful, so links to these resources can be found on my blog, Tornadoes and Red Shoes. If you’d like to schedule an appointment with my pediatric ophthalmologist, Dr. Douglas Fredrick, a link to Byers Eye Institute is also listed.

9. What are you involved in that you’re excited about?

Dance, dance, dance. My new favorite part of life is freedom of movement in a visually stable world. I’ve experienced a number of balance and spatial disorientation challenges. What better way to address these than dance?

I’m developing a dance program for visually challenged children. Cheryl Burke Dance, in Mountain View CA, is working with me on the project. I am seeking 10 visually challenged children ages 6-12 for a proof-of-concept class. Of course, I’m the guinea pig for the project.

10. Is there anything else you’d like to add?

Go Stanford!

Thanks so much for your time, and passion in helping those with vision challenges E. Marie.

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