Last updated on November 26, 2023
As of today, Leigh is wearing special contact lenses for degenerative myopia. She has high-end sunglasses to wear with those contacts, too. With the MiSight contacts and her sunglasses, Leigh can see with 20/20 vision.
I cannot express what a relief it is that she can see well again.
School isn’t designed for differences. Being autistic is difficult enough. The back brace was an extra obstacle. Now, there’s the real possibility she could be losing her eyesight.
Children shouldn’t have to be so strong. Leigh and Anne went through so much before arriving in our home. They spent too many years as foster children, though thankfully with us. And now there are these extra challenges. It upsets me, even though it’s all beyond our control.
The vision adventure began the evening of September 12, when I noticed that she was struggling to read the projection screen during robotics team orientation. When Leigh was taking notes, her nose was almost touching the pages of her notebook. I asked her to read some of the posters around the room. She could only read words that were more than a foot tall.
Panicked, I called the optometrist the next morning and set up an appointment for September 13. Though she continued to say her vision was fine, the machine readings and traditional tests proved otherwise. The optometrist was concerned enough with the first readings obtained by a technician that she repeated the machine and eye chart exams.
Leigh’s vision has declined dramatically in six months. Susan has recorded Leigh’s vision exams in a table. We log everything, something we did with medical information before we became parents.
| Date | OD Sphere | OS Sphere | OD Cylinder | OS Cylinder | OD Axis | OS Axis |
|---|---|---|---|---|---|---|
| 18-Nov-2019 | -0.50 | -0.75 | -0.50 | DS | 063 | – |
| 9-Jan-2021 | -1.75 | -2.00 | -0.50 | DS | 038 | – |
| 10-Jan-2022 | -3.25 | -3.50 | -0.50 | -0.50 | 015 | 180 |
| 14-Sep-2022 | -3.50 | -4.50 | -0.50 | -1.00 | 030 | 175 |
| 23-Sep-2022 | -4.00 | -4.50 | -0.50 | -1.00 | 180 | 175 |
| 3-Oct-2022 | -4.25 | -4.50 |
The OS (oculus sinister) data are for the left eye and the OD (oculus dextrus) are for the right eye. The “sphere” value indicates myopia (near-sighted) or hyperopia (far-sighted). The further from “0” the more severe the distance issue. Negative values are myopia and positive values are hyperopia.
Cylinder and axis readings indicate how round an eye is, with round being the ideal shape. When an eye isn’t round, you have astigmatism. The axis is the “angle” needed for glasses to correct the astigmatism. As an eye changes, so can the angle of correction.
What you’ll notice is Leigh’s myopia jumped significantly in a year, from 2021 to 2022. Then, the myopia kept increasing this year. The astigmatism also increased, and the angle of correction changed every eye exam this year.
Obviously, what’s happening with Leigh’s vision is serious.
There’s a myopia scale, as well as data on the risks associated with myopia. These are not reassuring numbers when your child has quickly progressing myopia. The unfiltered truth, which the doctors explained to Leigh, is that once myopia reaches -6.00 on the scale, everything becomes more difficult. Legally, you’re blind without glasses or contacts. The risks of so many other complications skyrocket. Retinal detachment or macular degeneration are likely to occur.
| Myopia Range | Cataracts | Glaucoma | Detached Retina | Macular Degeneration |
|---|---|---|---|---|
| -1.00 to -2.99 | 2x | 4x | 3x | 2x |
| -3.00 to -5.99 | 3x | 4x | 9x | 10x |
| -6.00 and Worse Legally Blind |
5x | 14x | 22x | 41x |
Leigh is on the trajectory for a -6.00 reading before she’s 16 years old. She would be legally blind in many states. It’s impossible not to be constantly worrying about something more serious.
The optometrist referred us to a childhood myopia specialist. That appointment was on September 23. To my shock, Leigh’s vision tested even worse! In ten days, the change was significant enough to require a new prescription for eyeglasses.
A lengthy exam commenced, as the specialist eliminated ocular cancer, macular degeneration, and a long list of other potential causes for myopia. Thankfully, none of the worst possibilities were diagnosed. Not that degenerative myopia is a good thing, but I sure wasn’t ready for a cancer diagnosis.
The specialist discussed the various options for treating progressive myopia in children.
None of the myopia treatments are covered by insurance. The health savings account (HSA) we have also caps what can be paid for myopia interventions.
We are fortunate to be able to obtain the care Leigh needs. Other families can’t cover $1500 to $2000 or more for myopia treatment.
Leigh keeps her focus and her goals. That’s not my dad-pun, either. That’s her pun.
She wants to attend Texas A&M to become a veterinarian. She wants to learn how to play the synthesizer, drums, and guitar at the School of Rock. She wants to be on a winning robotics team. She also plans to be an artist and writer. She has a long list of goals.
Nothing is going to stop her from reaching her goals, Leigh says.
What makes me incredibly proud of her is that her teachers notice her confidence. They say she has determination, persistence, and grit. She doesn’t give up. I take no credit for how amazing she is. Leigh deserves all the credit for whatever she achieves.