August 7, 2015

Conquering Strabismus


One day in the early winter of 1999, my two young children (at the time they were 3 and 1) and I went to see my parents. We had moved to a very small community and I still doctored in the city we had moved from, which conveniently was where my parents were living. We traveled in the morning since my appointment was early that afternoon. After my appointment, we were hanging around the kitchen when my mother mentioned to me that she noticed my son's eye was "falling". I had no idea what she was talking about but after looking closer it became obvious to me. His left eye was falling towards his nose.

I felt like a terrible mom for not noticing this myself. How could I have missed this? I quickly put my feelings of guilt aside and called his dad. It was early enough in the day so I called for an eye appointment right away. Since we were staying over anyway, it worked out that I was able to schedule an appointment for the next day.

My son with my Dad, one year before strabismus was notice
by my Mother. His eye looks fine. (January 1998)

As mom's do, I worried that night and kicked myself for not noticing this was going on. But sometimes, when you are close to a situation and around someone all the time, you don't notice changes as readily. I was just thankful my mother had noticed and said something to me.

The next day, I took my little man to the eye doctor. He was great, much calmer than me. All kinds of thoughts were running through my head. What could be wrong? Why is his eye falling? How can they do an eye exam on a three-year old?

The test that sticks out in my mind the most was the depth perception test. They had given him this little booklet and asked him a series of questions and had him touch the pictures in response, while wearing a special pair of glasses. I wasn't prepared for them to tell me he scored a -0-. Yep. A big fat zero. He had no depth perception. None. He was farsighted and that is also when she mentioned strabismus. She didn't want to jump to strabismus immediately since his vision wasn't good. She wanted to see how his eye reacted to glasses before concluding strabismus and trying more aggressive therapy. She prescribed corrective lenses to see if the left eye would strengthen. We needed to give it six months and come back for a re-check.

I took his little hand and we went to the display of the smallest eyeglasses frames I had ever seen. I ordered the glasses, made an appointment for that coming August, and went home to wait for the glasses to arrive in the mail.

It was about 10 days later on a Saturday morning when the package arrived. We were headed to a neighboring town for a basketball tournament. We stopped by the mailbox in hopes of the glasses being there. Amen. There they were.

The instructions we were given were to have him wear them for an hour. We were told most kids don't like having something on their face and will take them off but to have him shoot for an hour the first day and gradually increase the amount of time he wore them each day, until he was used to them. He was excited to put them on so we crossed our fingers and went inside to the tournament.

The hallways were crawling with people and I will never forget how my son reacted. He was holding my hand, walking beside me when he started saying, "Mom, Mom, Mom" and tapping my leg. He had let go of my hand and when I looked down at him he was spinning in circles while repeating "Mom" over and over. He was moving out of people's way and looked frightened. It dawned on me in that moment, that was the first time he was really able to see people coming at him.

Seeing him experience this for the first time, at three years old, brought other memories to light. He never wanted to go very high when he was on swings. He didn't like going down a slide that was more than a few feet off the ground. All because he couldn't tell how far up he was and now he was starting to notice.

His dad was holding our daughter so I took her from him so he could pick our son up. We went in to find a seat for the game, but I found myself watching in awe of my son being in awe of everything around him. It was kind of magical and my heart swelled with happiness. He loved his new world and made the connection with his glasses. He wore them the entire day and didn't want to take them off when he went to bed that night. So much for the theory of him not wanting to keep them on.

Over the next six months, I watched for improvement in his eye. Initially, there were improvements, but as the months went by, I noticed his glasses didn't seem to be working as well as they were in the beginning and his eye would fall dramatically when he wasn't wearing the glasses. It was time for that six month check-up.

The doctor, too, noticed that the improvement we were all hoping for wasn't quite there. The next step was patching his eye and seeing a specialist. The appointment was made with the specialist and we let him pick out fun patches for his eye. We were to patch the good eye (his right eye) to force the left eye to work harder and help his brain know to use it.

The specialist explained that strabismus is a muscular and neurological disorder. In my son's left eye, the muscles on the outer part of his eye were too long, while the muscles on the inner part of his eye were too short, therefore, his eye was falling towards his nose and he didn't have control of both eyes at once. He went on to say that what happens is the brain will eventually stop using the affected eye. Since it wasn't working properly, his brain would eventually give up and he would lose his vision in that eye.

 

Treatment was to begin with aggressive patching therapy. He was to wear the patch over his good eye
(the right one) all the time, for several months, only taking it off to bathe and sleep. He had to go back frequently to check the progress on this left eye, to see if it was strengthening, and also to be sure he wasn't losing strength in the eye we were patching. When you patch the good eye and it isn't being used, it will weaken. Once his left eye was strong enough, surgery would be the next step.

We began patching in August of 1999 and his eye was strengthening. As the months went on, there was some deterioration of the right eye from being covered so much, so we then had to switch things up. The schedules of eye patching varied from here on out. Some weeks we patched the bad eye for a few days in a row and then the good eye for one day. Some days we patched the good eye (right eye). Some days we patched the bad eye (left eye). Some days we patched the good eye for a while then switched to patching the bad eye for a few hours. It was daunting to keep the schedules straight but we were determined to give his eyes as much strength as possible before surgery.

Now, no one wants to have surgery and it is a scary thing regardless of age or reason, but as a mom, we were talking about operating on my four-year old's eye. The specialist was talking about taking my son's eye out of his head. Tell me I wasn't freaked out.

The way the surgery would go was they would remove his left eye from the socket, take a portion of the outer muscle (the side that was too long), then transplant that portion to the inner muscle (the side that was too short) to lengthen it, essentially straightening his eye out.

This is a delicate surgery and there was a risk of over correcting or under correcting the eye and we were told to expect his depth perception to be restored to, at most, 80%. If too much of an over correction or under correction was made, it could mean surgery again later on when he was older to make an additional adjustment. As long as he could see, as long as he had some depth perception, we were on board. Surgery was scheduled for April of 2000.


As a parent, that was one of the scariest days of my life. They put him into this little red wagon with this blanket and wheeled him away. I was trying so hard not to cry until he couldn't see me any longer, but I couldn't hold back the tears. Surgery wasn't supposed to take long, so I held on to that and waited.

Luckily, I didn't have to wait long. Surgery went well and now recovery was to begin. He still needed glasses but no more patches. His eye looked icky but the doctor felt confident in the results we could expect.

A few weeks later at his surgical follow-up visit, the doctor was impressed with the healing and how his eye was looking. My son was his last patient as he would be retiring that December. We scheduled our final visit with him that September and we were blown away by what he had to say at that appointment.

He said, "Sometimes, with this surgery, you over correct a little or you under correct a little, it's difficult to get it just right. But I can say that his eye is dead on. If I hadn't done this surgery myself, I wouldn't know it had been done. He has no scar tissue and his eye is perfect." Let me tell you, if I had the capability of doing a backflip, I would have done one right there in his office. He conducted another depth perception test and my son had regained 100% of his depth perception back. 100%! Amen!

My son has not had to have his eye re-done and he will be 20 this Fall. The surgery has held and you would never know he had it corrected. Since experiencing this with my son, I have come across a few children that I have noticed this in. Not people I know but just children I've seen in stores, sitting in the shopping cart. Walking by I tend to look at their eyes. The first time I noticed it in someone else's child, I was so nervous to say something. I remember how it felt to have my mother tell me what she saw and I hadn't noticed it myself.

I didn't let that stop me. I smiled and struck up a conversation with the mother. Who doesn't love to talk about their kids? I told her I noticed something in her son's eye that I had seen before in my own son's. I told her about strabismus and urged her to have him looked at. I was polite and tried to be as sensitive as I could be. I could see on her face exactly how I had felt when I heard it from my mother. Horrified there could be something wrong with my child and guilt that I hadn't noticed. I told her how I hadn't noticed it in my son either and that I am no expert, but it wouldn't hurt to have his eyes examined. She thanked me and I could see her working this information over in her mind. I hope she took him in.

If you notice something out of the ordinary, I urge you to please, please, please say something, no matter how uncomfortable it is. You could save someone's vision, hearing, or even life. If you think your child could have strabismus, don't wait to have them examined. The earlier it is detected and treated the better the outcome.

Photos from 1998

About one year before the strabismus diagnosis and just before his eye started to fall.
His eye looks perfectly fine. (January 1998)

You can start to see a change in his eye, but being around him all the time
we didn't notice it because the changes were so gradual. (March 1998)

Photo from 2015

Me with my children.
As you can see, my son's eye is still holding strong!

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2 comments :

  1. Hi there! I happened upon your old blog through someone else's blog about DIY (!) and it bumped me to this blog! (whew!) Anyway, I just read this story, and I just want to say HALLELUJAH that your son was able to have successful treatment of his eye. He looks great. Beautiful family photo. :) Julie

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    Replies
    1. Hello Julie! You must be exhausted from all the detours you had to take to get here! I am so glad you stuck with it and took the time to read my post. =) THANK YOU! We are so thankful his treatment was successful. It really amazes me he has never had to have his eye redone. Someone was watching out for him. Thank you again for stopping by! Please come again!

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