Running For Research - PWSAccording to the PWS Global Registry, 50% of participants are near sighted, 40% have strambosis, 29% have astigmatism, and 25% are far sighted.
Clementine was born with a strabismus. Strabismus is a condition in which a person’s eyes are not correctly aligned. Often referred to as “lazy eye,” strabismus typically presents itself with one eye aligned and moving regularly and the other settled pointing up or down, or off center to the left or right. The afflicted eye may alternate between one and the other; and the position of the eye may change, moving from properly aligned to off-center and then back again. The underdeveloped muscles resulting in strabismus allow the eye to drift, creating vision problems.
Treatment for strabismus may include eyeglasses, prisms, vision therapy, or eye muscle surgery. If detected and treated early, strabismus can often be corrected with excellent results. People with strabismus have several treatment options to improve eye alignment and coordination. They include:
- Eyeglasses or contact lenses. This may be the only treatment needed for some patients.
- Prism lenses. These special lenses are thicker on one side than the other. The prisms alter the light entering the eye and reduce how much turning the eye must do to view objects. Sometimes the prisms can eliminate the eye turning.
- Vision therapy. A doctor of optometry might prescribe a structured program of visual activities to improve eye coordination and eye focusing. Vision therapy trains the eyes and brain to work together more effectively. These eye exercises can help problems with eye movement, eye focusing and eye teaming and reinforce the eye-brain connection.
- Eye muscle surgery. Surgery can change the length or position of the muscles around the eyes so they appear straight. Often, people who have eye muscle surgery will also need vision therapy to improve eye coordination and to keep the eyes from becoming misaligned again.
In Clem’s case, her strabismus was apparent from birth. She had a crossing of her left eye that was significant and some crossing of her right eye that was transient and appeared more often when she was fatigued. When she was about 5 months old, she was prescribed glasses as a first step to correct the strabismus. Boy did she look cute in her little pink glasses! But it was hard to keep glasses on a child of her age. Clem would routinely pull them off and I would find them on the ground as much as I would find them on her head.
Clem wore glasses from 5 months to about 18 months of age. At 18 months, it was decided that the strabismus was not improving to a great enough degree and she would need corrective surgery. I remember how nervous I was on the day of the procedure. She was just a baby and would need to be put under anesthesia!
On the day of the surgery, Clementine’s blood sugar levels were a bit unstable. This was probably caused by a lack of food in preparation for the anesthesia and of course, because she is a T1 diabetic. As a result of her BG instability, we had to wait for almost 2 hours in the pre- surgery room for her BG to reach an appropriately safe level so the procedure to begin. It wasn’t a great way to start!
The procedure itself was quick. When Clem was brought back to me, both of her eyes were completely red. She didn’t seem to feel any pain though and recovered quickly. Her eye were both straight and she looked wonderful. After recovery her eyes were examined and she was given the good news that her vision was 20/20. Off went the glasses!
Because Clem has both T1D and PWS, she has her eyes checked 2 times a year. Up until a few months ago, everything was completely normal. Recently however, we have started to notice a slight drifting of her right eye. This happens periodically and mostly when she is tired or is daydreaming. It has been happening more frequently in the past few weeks so I decided to take her to her ophthalmologist, the same doctor who corrected her strabismus 9 years ago.
After examining her, he told me that while her vision is still 20/20, he believes she has developed something called a dissociative vertical drift in her right eye. DVD is a condition in which one eye drifts upward when it is not being used. The eye may drift upward either frequently or infrequently. The amount of drifting may vary during the course of the day. DVD may be present in one or both eyes, and the amount of drift can be unequal between the eyes. Aside from the upward drift most frequently seen in DVD, outward drift or rotation of the eye can also be seen. Occurrence of DVD is highest in those with early onset strabismus (misalignment of the eyes). DVD may also develop after eye muscle surgery for strabismus.
What does this new diagnosis mean? For now, nothing. Surgery to correct the DVD may be a possibility for the future. It will really depend on how it continues to develop and if it begins to impact her vision. So we will wait and see. And keep our fingers, but NOT our eyes crossed!
Whatever the future course of action, Clem will face it with her usual courage and grace and we will move forward toward a solution. In the scheme of things, this is but a small bump in the road!
