A quest for Luke
Misdiagnosis of ADHD opens family’s eyes
Thursday, November 15, 2007
It happened to us
As a parent, our job is to fix whatever is broken in our kids and comfort them with answers and advice. I couldn’t do that for my son, Luke.
I couldn’t tell him things would be OK because I didn’t know what was wrong.
When Luke started struggling in kindergarten, we were surprised. By second grade, that surprise turned to horror as we watched him academically shut down in the classroom and emotionally shut down at home.
As I looked into his eyes, which were filled with anger, frustration and sadness, I made him a promise. I promised to find answers—answers to why he wasn’t able to keep up with the work at school like his friends and why he wasn’t able to focus in the classroom and reap any rewards from his efforts.
We decided to consult with a private neuropsychologist along with the school specialists. The amount of help and caring given to Luke, my husband and me overwhelmed us. Everyone in Luke’s school banded together to help him, from his classroom aide and teacher all the way up to the principal. I was amazed at how much effort a school could put into helping one child.
After 15 hours of testing by the neuropsychologist and three hours of testing at school, the diagnosis came back. "Luke has ADHD."
Luke has ADHD? My gut told me no. Luke, my artist, my inventor, my "Leonardo Da Vinci" as I call him, has ADHD? And I need to medicate him? Make a quiet introspective boy even quieter? What will that do to him?
What the medication did was make Luke sick and stole his personality. Each medication we tried seemed to turn a calm, focused boy into a hyper, withdrawn, angry one. It felt like my heart was getting ripped out of my chest each time I gave Luke a pill. I knew I was going to make him sick for the day and unable to enjoy anything, especially the one thing he always loved, playing with his friends.
So we stopped.
Back at square one
But none of us gave up.
One Saturday morning, Luke saw a commercial on TV for Sylvan Learning Centers and came running up to me, grabbing my arm, "Mommy! Mommy! Can I go there? Can I? Please? They say they can help me do better in school!"
I reassured him with a hug.
As I continued a new quest for answers, I heard about developmental optometrists from a friend. My neighbor recommended two doctors in Arlington Heights who are supposed to be the best in their field, specializing in treating children like Luke who are having difficulties in school and no one knows why.
Six months ago, Luke underwent extensive testing of his eyes.
One of the tests is a 3-D puzzle. Luke couldn’t do it. I bit my lip and put my hand over my mouth, trying hard to hold back tears as I watched my son struggle to fit in a giant puzzle piece—something that should come automatically to an 8 year old.
Then on Aug. 21, another diagnosis: Occular Motor Dysfunction and Saccadic Dysfunction, two visual disorders silently plaguing Luke with blurred vision, lack of depth perception, eyestrain and headaches.
Dr. Neil W. Margolis says Luke’s vision problems could very well inhibit him from functioning normally at school, in sports and in life. These types of vision problems can make reading and doing math virtually impossible because kids with eye disorders can’t learn very well by sight. And because Luke doesn’t have any depth perception, he can’t judge where a ball is in relationship to him, which would explain his frustration with any kind of sports involving a ball.
Children with eye disorders can’t see normally, no matter how hard they try to focus. They have 20/20 vision, but things are blurry and they use an enormous amount of energy trying to keep their eyes from hopping and jumping around while they read. Their head aches. Their eyes hurt.
So instead of learning concepts all day in school, Luke has been trying hard to just focus. The doctor told me many children with vision disorders exhibit behaviors that mimic ADHD and very often get misdiagnosed.
Who wouldn’t fidget in their seat and sharpen their pencil for 20 minutes instead of doing work that requires the use of their eyes?
Last August, Dr. Margolis explained Luke’s treatment plan for the next year or so that he will oversee. It will consist of visits at his office with a therapist along with at-home exercises 20 minutes a day, four days a week. Luke will be monitored after treatment indefinitely. As I listened I felt like I finally got my solution, my answers, my hope.
And then the skeptic in me took over. "So, after a year of doing all this, what percent chance does Luke have of seeing results, no pun intended?"
Dr. Margolis smiled and said 100 percent—depending on Luke. He could guarantee that when Luke’s done with therapy, his frustration level will diminish and he will see direct results from his academic efforts.
One thing Dr. Margolis said he can’t fix completely is Luke’s handwriting.
"That’s OK," I told him. "So he’ll have handwriting like a doctor." I felt like springing up from my chair, grabbing him and hugging him as hard as I could.
I didn’t. I figured I’d save that job for my third-grader when he’s done with therapy next year.
Is it a vision problem?
One in four kids in a classroom has vision problems and 60 percent of "problem learners" have undetected vision problems.
The College of Optometrists in Vision Development in Aurora, Ohio, has developed a list of signs to watch for in your child:
• Frequent headaches or eye strain
• Blurring of distance or near vision, particularly after reading or other close work
• Avoidance of close work or other visually demanding tasks
• Poor judgment of depth
• Turning of an eye in or out, up or down
• Tendency to cover or close one eye or favor the vision in one eye
• Double vision
• Poor hand-eye coordination
• Difficulty following a moving target
• Dizziness or motion sickness
• Poor reading comprehension
• Difficulty copying from one place to another
• Loss of place, repetition and/or omission of words while reading
• Difficulty changing focus from distance to near and back
• Poor posture when reading or writing
• Poor handwriting
• Can respond orally but can’t get the same information down on paper
• Letter and word reversals
• Difficulty judging sizes and shapes
For more information, go to www.covd.org.