When Reese Guidry was a barely a newborn his mom rushed him to the ER in a panic when his eyes kept rolling back in his head.
“It scared me,” said Laci, Reese’s mom. “I thought something was really wrong.”
Laci had been noticing that her firstborn had eye movements and patterns that didn’t seem typical. But it wasn’t until that hospital visit that she got an official diagnosis—nystagmus.
Nystagmus is a disorder characterized by constant, involuntary eye oscillations (movement) and causes impairment of many eye functions, such as visual acuity, contrast sensitivity, visual recognition time and motion and depth perception.
Nystagmus can run in families and Laci learned just a few years ago that she also has it (as does her other son).
“I have nystagmus but mine is very mild and not noticeable,” said Laci.
Reese was prescribed glasses at age 1 in hopes of helping him see a little better, but once he was enrolled in school it became apparent just how much Reese’s nystagmus was impacting his vision. Now age 10, Reese says nystagmus has prevented him from doing certain things.
“I can’t play most sports because my coordination and fine motor skills are affected by my vision,” he said.
When Reese entered 1st grade his teachers recommended assisted technology and braille (Reese is not considered legally blind). While they decided to forgo braille, Reese, who is now in 5th grade, uses a large iPad at his desk that has a camera attached to it. He also uses special paper for writing assignments.
“I can point the camera at the board the teacher is using and enlarge it so I can see it better,” he said.
When his nystagmus started to lead to eye fatigue and increased headaches, Laci sought the advice of a Facebook nystagmus group where one person’s name kept repeatedly popping up—Dr. Richard Hertle, director of pediatric ophthalmology at Akron Children’s and a world-renowned nystagmus expert.
“Dr. Hertle came up as one of the few doctors in the country who researches and specializes in nystagmus,” said Laci. “I figured if we are going to seek care, why not go to the best?”
After a 3-month wait, Laci and Reese traveled from Youngsville, LA to Akron to meet with Dr. Hertle.
“Reese presented with typical infantile nystagmus syndrome associated with a genetic/familial form of albinism (disorder of hypopigmentation),” said Dr. Hertle.
“The way Dr. Hertle works is you have your initial appointment and extensive testing with him, and he determines if you are a surgical candidate,” said Laci. “If you are, you are scheduled for surgery the next day.”
Thankfully, Reese was a candidate for the 1-hour surgery that helps improve the eye wiggle and head posturing nystagmus patients tend to adopt to control their wandering gaze. Technically there is no cure for nystagmus, but surgery can improve visual functions like letter vision (acuity), contrast sensitivity, motion detection, depth perception, visual recognition time and gaze dependent vision.
“In July, Reese made a return trip to Akron and I prescribed additional treatments for his visual system including oral baclofen and contact lenses,” said Dr. Hertle. “These are added to surgery to further reduce the dynamics of the nystagmus rhythm and enhance acuity.”
While Reese’s vision has improved to 20/100, Laci hopes it will improve to 20/70 which would made him a candidate for a restricted driver’s license down the road.
“His vision won’t be fully developed until age 15 so we’ll have to wait and see,” she said. “There is still time for his vision to improve.
“Dr. Hertle gave us hope when no one else could,” she added. “He’s very personable, has a great bedside manner and is so knowledgeable about nystagmus. I want Reese to be able to look back and say that his mom took him to very best surgeon and did everything in her power to get him the best possible care.”