10 days ago I determined that my youngest son has nystagmus and 3 days ago that was confirmed by our first eye doctor. You can refer to my previous post about the day our world turned upside down.
Since Jesse's diagnosis I've been scouring the internet for anything and everything about nystagmus. What are the treatment options? What therapy is available? What should we do with him now to exercise his eyes more? What presents should I buy him at Christmas to maximize his enjoyment and yet challenge him?
First the obvious question. No, there is no cure for nystagmus or optical albinism (if that is what is his underlying condition).
Second, there are a lot of promising options out there.
Since beginning my research I've joined the American Nystagmus Network on Facebook. Yes, thank you Facebook. Thank you for bringing me closer to a group of people who have thus far been a wealth of information for me.
From that group and from doing research online I've found out about several doctors across the country who have lead cutting edge research into "treating" nystagmus. I'm cautious to call it treatment but their results have been promising. Two in particular have been of interest to me lately: Dr. Hertle (Akron OH) and Dr. Granet (San Diego CA).
Today I was at work pumping milk for Jesse during my morning break and I did more research into Dr. Hertle. I started to get so worked up and nervous that I only pumped enough for barely one bottle (thanks stress). I called Jeremy and told him we needed to at least make contact with Dr. Hertle to see what he had to say. We would call in the morning.
5 minutes later I was sitting in a conference room calling. I couldn't wait. I needed to know.
The nice woman in his office answered the phone and was very understanding and informative. She obviously got calls like this everyday. She told me the first steps that were necessary to get on his wait list (about 4 months at this point) and she started talking me through what it would be like if we chose to visit them and if we chose to have surgery.
Yea, surgery. On a 5 month old (or 9 at that point).
Okay deep breaths everyone.
I was shaking. I'm still shaking. The rest of the day was not especially productive for me.
Okay back up, what is all this surgery stuff?
Dr. Hertle is at the forefront of some cutting edge research (and now approved FDA procedures) for helping patients with nystagmus. The first step is a consultation, as you'd assume. You go through a series of tests (eye movement recording, visual evoked potential) and determine what the best course of treatment might be for you (or your little one in this case). Treatment options could be 1) wait and see 2) contacts to help slow down the movement of the eyes 3) drops, though I don't know as much about this one or 4) surgery. Surgery involves cutting the muscles around the eye and reattaching them to move the null point and help correct the visual acuity, presumably from the calming of the eye movement.
That paragraph pretty much sums up what I know so far about the treatment options and surgery. It's terrifying to think we might be cutting into our little guys eye. I can't even think about it. There is still so much to research and learn. It would be such a big decision I know that I'm not nearly ready to make it yet. But I am hopeful that there may be a way to correct his eye movements and help him see better. And I know getting on a wait list only means that you'll have a chance to see the doctor. Jesse may not be a candidate for any treatment, or we may decide he would benefit from surgery but we choose to wait a year, or maybe we just feel that we aren't ready and we don't even schedule the appointment once we get the call, but at least we will be on a list and have some options.
At this point options are all that I'm searching for. What are our options and what is the best thing that we can do for sweet baby Jesse?
Part III: The Waitlist