Wednesday, January 20, 2016


Mira had her first ophthalmology appointment today, her first since 2009. While 6 or 7 years may seem like a long time, we have always been under the impression the the crux of Mira's issues have never been visually-based, but rather primarily neurological. She has seizures and that constant influx of neurological static causes her to have a problems interpreting and processing the world around her. She was diagnosed long ago with CVI (Cortical Visual Impairment) which is basically a disconnect with the brain and how it processes information, as opposed to a structural issue that causes problems with vision. The theory has always been this - if you stop the seizures, you allow the brain to heal and make connections, thus, affect vision and processing. We have never been able to gain solid seizure control with Mira, so there really is no point in seeing an ophthalmologist or a vision specialist. Mira has had a few 'monitoring' appointments in the past, when she was on Vigabatrin, as there is a risk of retinal toxicity with that particular pharmaceutical. Other than when she was doing that trial and being followed in clinic, we have only had a routine appointment back since, which again, was back in 2009. We had set this appointment awhile back, but we had to reschedule at least once because of some traveling conflicts, so we were anxious to see where Mira was at. Sarah and I both went to her appointment at CMH and we were shocked at what they had to say. Basically, Mira's is extremely, extremely nearsighted. Shockingly nearsighted.

Years ago, back in my college days, I worked as a lab technician for a company that cut lenses for eyeglass prescriptions, similar to Lens Crafters. While it wasn't a long term career decision, it did give me some familiarity with prescription lenses an the technical precision required in developing a set of glasses. About 90% of the prescriptions for myopia that came through the lab fell into the -1.50 to -3.00 range. About once every few weeks, we might get a -6.00 to -8.00, which would require more attention to detail in the lab with the actual lens cutting, frame selection/patterns, and so on, since of course, the higher the number, the worse the vision, and ultimately for patients with myopia, the thicker the edges of lenses are. Only once, in my year or so tenure working in the lab, did I ever see anything over -9.00. This is Mira's prescription from today:
I was completely shocked when they told us that her vision was so awful. Needless to say, we have a follow-up appointment in a month with a specialist that has more familiarity with CVI and how Mira's vision, seizures, and everything else play into this. They will also look at structural issues and dive into this deeper. In the meantime, we are going to pursue getting her some glasses - this is uncharted territory for Mira and we aren't sure how she will react to having something on her face. It's no wonder she cannot focus on anything more than a foot away from her. Prior to her appointment, I had the idea that we were going to discuss potential avenues with her vision therapist at school, to try out a Tobii device, to see if it would be something Mira might be able to take advantage of. However, this really threw me for a loop. 

On top of this, as we were in the waiting area for her appointment, Mira starting having a string of subtle tonic-clonics. She had 2 or 3 within about an hour - not fully involved, intense tonic-clonics, but rather they seemed to slowly unravel. Definite seizures, but not as involved as her typical ones. She continued to have a few more of these episodes as Sarah was taking her to school. With all of this activity, we ultimately decided against taking her, and Sarah ended up making a detour for home. Mira continued to have an off day - clammy, rigid, and quiet. She was in a decent mood this morning and at her appointment, but she slowly clammed up the rest of the day and was very reserved - not irritable at all, just altered.


Reagan Leigh said...

Reagan's had a CVI diagnosis since 6mo. She's always gotten vision therapy (even when she was still seizing). I think it's helped a lot, if anything just excercising her eyes and educating her teachers/therapists on how to better work with her and her CVI. In addition I think her vision has improved a lot as she's gotten older maybe the therapy has helped or maybe she's just out growing it? Who knows.

Anonymous said...

Wow! Im happy you found out and I hope she will accept wearing glasses! i just got some myself and it's like a new world opened up.. I'm still amazed by it every time I use em.. so bring your camera - it might be a kodax moment! :)

Marc said...

Mira has had the CVI diagnosis for a long time as well and she is still getting vision therapy at school, but I think everything they work with her on is at close range, which is appropriate I suppose. She does seem to focus temporarily on certain objects really close, but based on her prescription, she probably can't focus on anything beyond her reach.