Eliza has done 5 weeks of vision therapy so far! I had never heard of vision therapy until recently so I thought I would write about what I have learned and seen so far in case it might help someone else!
Eliza had perfect vision until age 2.5 when a tumor grew around her optic nerve, cutting off the blood supply to the nerves of her right eye. When nerves have their blood supply cut off, they die. Even though her tumor significantly shrunk with over a year of chemo, according to images of Eliza’s right optic nerve, she has about 16% of the nerve remaining “alive.” This eye is so weak that if we did not do anything about it, her brain would start only using her left eye and completely “forget” her right eye. I have heard many stories of people that live with vision in only one eye that function totally normal day-to-day BUT if there is a chance we can improve Eliza’s vision, even a little, I am willing to try!
I asked Eliza’s ophthalmologist at Seattle Children’s about vision therapy and she did not really recommend it either way. She said “you can try patching her good eye for 2 hours a day and see if there is any improvement, but if you are just forcing her to play blind for 2 hours a day it is pretty pointless.” From my research, vision therapy has been scientifically proven to help with convergence insufficiency, but there have not been as many studies that have scientifically proven vision therapy’s help in other areas.
However, since Eliza has started vision therapy:
- She is now able to tell me how many fingers I am holding up in front of her “dark” eye when her strong eye is patched and she WAS NOT able to do that 5 weeks ago.
- She has gotten faster (better balance) at running around our kitchen table.
- She also has started coloring inside the lines instead of scribbling.
- She wrote her whole name out for the FIRST time ever a couple of days ago.
- She has gotten more comfortable walking around the house with her patch on.
This could just be Eliza getting older or more confident…or it could be vision therapy. It is hard to know if it is just the placebo effect that we are noticing these changes, or if it is really making a big difference. It REALLY seems to me that it is making a big difference.
When we met with Eliza’s vision therapist for the first time, she discussed that even if we are not able to improve Eliza’s vision, doing vision therapy will help her brain recognize where “center” is so that she will be able to improve her balance, coordination, and writing skills. This is exactly what seems to be happening. I do think her vision is also improving and she has gotten significantly more comfortable with being patched.
Eliza has been going to the vision therapist once a week. It is similar to physical therapy or occupational therapy, but she just works on vision exercises. The downsides to vision therapy are that it is expensive (similar to a physical therapist) and not covered by our insurance. The exercises are a LOT of work too. Her vision therapy is one hour each week but we do her “eye exercises” at home for 30-45 minutes each day. This has to be done during a time when she is able to focus well. There is also a 30% chance that Eliza’s tumor could grow back which could potentially erase all progress we made with vision improvement. (I see this as a 70% chance of the tumor NOT growing back though!)
A lot of the activities for Eliza specifically include sorting shapes and colors with her strong eye patched. She also does balancing exercises (jumping on a trampoline while looking at a fixed point, walking heel to toe, etc) and hand-eye coordination exercises like alternating hands when tossing a ball.
From what I understand, we will learn quite a few different exercises from vision therapy, then stop going every week as we continue to do the exercises at home. After a few months we will go in and re-evaluate where Eliza is at, see if we need different/new exercises or glasses, then continue the exercises at home.
I don’t think Eliza will ever have normal vision in her right eye, but I want to know that we did everything we could to try to have her vision be as strong as it can be! Vision therapy is a very non-invasive way to move in the right direction! I’m not an expert on vision therapy by any means, but I would love to try to answer any questions if you have any! Or correct me if I am wrong about anything! I will hopefully update again in the future once Eliza is further along in her vision therapy sessions!
Hello Swanson Family,
I follow #NF1 on Instagram and your posts kept coming up so I decided to follow you as well 🙂 my daughter, Jax, also has NF1 and was diagnosed when she was 13 months, she is now almost 3. Last June during a routine MRI we found optic gliomas on each of her optic nerves, we have been monitoring them every 3 months and in December we found that her right tumor had grown significantly. At the time her vision in her right eye was still stable at 20:30 and her left eye still was stable at 20:20. We still decided to start chemo due to the size of the tumor. As of last week we have found out that her right eye has completely lost vision. We did another MRI to see what was going on. Thank goodness, both tumors are stable and have not grown but unfortunately that doesn’t explain the vision loss. The doctors have changed her to a new chemo treatment- vinblastin and avastin. I’m not sure what Eliza’s treatment plan was but they are hoping this will help reduce some of the swelling on the right optic nerve and is a more aggressive approach to attacking the left eyed tumor. It was a big pill to swallow when we found out that even with no tumor growth, she has lost Complete vision in her right eye so reading your blog was incredibly encouraging. We have an appointment with her neuro opthomologist in two weeks and I will ask her about vision therapy. I’m in the same boat as you, at this point it doesn’t hurt any to at least try! Anyway, I just wanted to send you a note to let you know we are out there and going through a similar situation, you are not alone mama! And again, thank you for your posts, it’s so encouraging reading another families story and getting ideas on how we can maybe help our little Jacqueline.
Ps- we live in Orange County CA now but I was born and raised in Poulsbo, WA and have a bunch of friends who now live in Bellingham!
I’m so sorry about the vision loss! Eliza started with Carboplatin and Vincristine which helped shrink the tumors but she continued to have a lot of swelling around her optic nerve which was causing her eye to visibly protrude about 4-5 months in to treatment. They took her off Carbo/Vincristine and switched to 8 weeks of Avastin which helped a lot with the swelling. She went back on Carbo/Vincristine until she had an allergic reaction and finished out her treatment with Vinblastine only.
Eliza did not lose vision in her right eye until about 4 months in to treatment, because even though her tumor was shrinking they said that the pressure on the optic nerve from the tumor that was still there was causing her vision to deteriorate. I am so glad we started chemo because Eliza’s left optic nerve was also developing a small tumor and that has gone back to normal. She still has 20/20 vision in her left eye.
I’m also never 100% sure when Eliza sees the ophthalmologist if the vision tests they are doing are accurate. It is SO hard to get a 2, 3, or 4 year old to sit still and try to read an eye chart, even if it is pictures. One time they told us they didn’t know if she could see light/dark and I’m pretty sure she could see light/dark the entire time. If nothing else, vision therapy has given me 100% confidence that Eliza does still have some vision in her right eye!
Thank you for sharing your daughter’s journey with me! ❤