Monday, January 21, 2008

Coping With Amblyopia, Otherwise Known As Lazy Eye

When Kaylea was in first grade she began complaining about not being able to see very well. I asked her teacher if Kaylea could have a vision screening. Her teacher filled out the paperwork and we waited. The day the nurse gave Kaylea her vision test, I happened to be substituting for Kayela's teacher. The nurse brought Kaylea back to the room and called me over to the door. She was unaware that I was Kaylea's mom. She told me that I needed to send a note home to Kaylea's parents and have them take her for an eye exam. I explained that I was Kaylea's mom and asked what the problem was. She informed me that Kaylea appeared to have some vision problems and would probably need glasses. She didn't know if the test was accurate because of Kaylea's age and the lack of reliability when testing children. She advised following up with an eye doctor.

That afternoon I let Bub know what the nurse said and we made an appointment for both Kaylea and me at the Wal Mart vision center. I was needing to get my contact prescription renewed so we thought we would take her in with me. Imagine our shock when the Optometrist told us that we really needed to take Kaylea to a specialist. He said that if the test he had given her was accurate, she most likely had Amblyopia "Lazy Eye" and we needed to see a Pediatric Ophthalmologist, immediately.

Luckily, we were able to get in with the specialist fairly quickly. When they tested her, our worst fear was verified. Kaylea was legally blind in her left eye. She could not even see the largest letter on the eye chart. Basically, her brain had quit communicating with her left eye and the vision was dying in that eye. Her overall vision was 20/20, but her right eye was doing all of the work. The Doctor told us that we would have to begin treatment immediately because we were working against time. Kaylea was 7 years old at that time and most children reach visual maturity between the ages of 7 and 9. Up until a child reaches visual maturity the brain can be coached into communicating with the "lazy eye" again by patching the strong "working" eye. The treatment that was prescribed for Kaylea was to patch her right eye for 4 hours each day. Also, she had to start wearing glasses to try to correct the vision as best as possible in the left eye. Her glasses had a thick lens on the left and a normal, no prescription, lens on the right.

Bub and I tried to get her as excited as possible about the whole process. We let her pick out her glasses frames and I even ordered special eye patches that had luau flowers, princess crowns, hearts, stars, etc. on them. Anything to make her think they were neat and want to wear them. Of course, as her parents (and adults), we realized the severity of the situation. Kaylea, on the other hand, didn't. She was OK with the glasses because some of the other children in her class had gotten glasses, also. She thought they were cool. However, she wanted nothing to do with the patches. She cried, screamed, fought and begged so that she wouldn't have to wear them. We were lucky in the respect that most of the time she could get her 4 hours of patching done after school, but she still didn't want to do it. My heart broke for her every time she cried and begged me not to wear it. She became very self conscious and paranoid from the experience. She would always say, "Mommy they are staring at me. They said I look weird."

Last summer, we thought we had won the battle. The Doctor told us Kaylea's vision had improved and they were going to let her go through the summer without patching to see if the improved vision would hold with her just wearing her glasses. Well, when we went for our last check up the vision had slipped in the left eye again. This was good news / bad news. The bad news was that she had not reached visual maturity and we were going to have to start patching again (only 2 hours a day this time). The good news was that she had not reached visual maturity and we were still able correct the problem with patching. (Kaylea didn't really think that was such good news!)

As a Mom, this is one of the hardest things I have had to deal with. Everyone wants their child to be perfect. We want the best for them in every way. I never wanted her to have to feel like she is different. I never wanted her to have her feelings hurt by a supposed "best friend" who wouldn't sit by her because her patch looked weird. I never wanted her to have self confidence or body image issues, especially at such a young age. All I know is Kaylea has dealt with the situation a lot better than I would have. When I was little I was so painfully shy that I couldn't stand the thought of being looked at or noticed. Kaylea, however, loves to be the center of attention.

As of now, we are still patching 2 hours a day. Kaylea has had the prescription changed in her glasses so that the lenses are almost equal widths. And we still have our battles over wearing the patch. I will give Kaylea credit where credit is due, though. As she has gotten older, she has learned to deal with the patching a little better. I think she now realizes that we fight with her because we love her and we just want what is best for her. This is one of those things in life that a child can't truly understand and appreciate until they grow up and have children of their own, though.


Mike said...

Hi. I just happened to come across your blog after googling amblyopia. I'm about 29 now. My situation was a little different; I have vertical strabismus in my left eye so it looks like my right eye is cocked and my left eye is small. This sucks, because it makes me look odd (or odder). What bothers me more is that it is breaking my mom's heart that I've not been able to settle down with a girlfriend or fiancee after most my my friends have married or got engaged. I don't know if it's just the eye thing, but the FACT that it's there always plants that doubt in mind. I can empathize with your thoughts. My mom is really hard on herself for not trying harder to get this fixed while I was younger. Now, many years later, as I'm getting the full brunt of the impact of this thing, it breaks her heart even more.

Know that someone understands, and that you do your best, and that's all you can do. All parents want their kids to be perfect, but when you think about it, whom among is us perfect? Some of our litle quirks are just a little more noticeable than others. I pray that your daughter will become a happy young lady and I hope for the best for you. And your story has eased my pain a bit as well.