Wednesday, August 15, 2012

Krystal's Journey - Amblyopia & Accomodative Esotropic Strabismus


The following is reader submitted by Antionatte, she shares her daughter Krystal's journey through Amblyopia and Accomodative Esotropic Strabismus.  


My name is Antionatte. I have an 8 year old daughter named Krystal  In 2008 when Krystal was 4 1/2 we noticed that every once in a great while her right eye would turn in towards her nose.  I took her to the optometrist, where she was prescribed her first pair of glasses.  She got a pink Disney Princess pair.  Her optometrist didn’t see a problem with her eye turn, and told us to just have her wear her glasses.

Over the next year her eye turn got progressively worse.  We were told about a pediatric optometrist in our area that specializes in such problems.  So we set up an appointment for her when she was 5 ½.  At this appointment she was diagnosed with Accommodative Esotropic Strabismus and Amblyopia.  We were told that he specializes in vision therapy, however because its effectiveness is controversial it is not covered by insurance.  

Krystal’s prescription was changed and she was prescribed bifocals.  She began weekly vision therapy sessions with the optometrist as well as daily exercises at home.  She did vision therapy for about a year with several prescription changes (which we had to pay for), but with little improvement in her eye turn or vision.  

In October of 2010 we changed insurance, and didn’t have insurance until December of that year.  Due to the change we all went in for eye exams with a providing optometrist.  I told him of Krystal’s diagnosis, and he told me she should be referred to a pediatric ophthalmologist so she could get a diagnosis through our insurance which may be able to cover treatment.  

In March of 2011 we saw Dr. Lanier.  She confirmed the original diagnosis, and prescribed yet another prescription for Krystal.  Her eyesight in her right eye was 20/200 and her left eye was 20/60, and her right eye was only working about 20% of the time.   We were given ideas on activities we could do at home in the place of vision therapy, and told to patch for 2 hours a day.


Within a few days of receiving her new glasses it was like something clicked!  She could see! She began to soar in reading, which she had previously had problems in, and her attention span in class increased.  Patching however wasn’t such a success.  

We patched 2 hours a day for the first several months, with improvement.  Every day was a struggle, and the patches we were using were not gentle, and sometimes left her looking like I beat her.  Eventually we changed to ortopad and she didn’t have a problem patching.  We were going in every 4 to 6 weeks and for the first six months she was making progress.  Around October of 2011 she wasn’t making as much progress, and we were told to go up to 4 hours.  

We could still do this without too much inconvenience, as she was out of school that many hours.  She refused to go out with a patch on!! We had made several quick trips while patching with less than positive reactions.  Krystal had always gotten great remarks on her glasses, but was now getting stares and rude remarks from ADULTS about the patches.  At almost 7 she knew something was off.

She still continued to make progress, but less than in the beginning. We were told to increase the patching time yet again to 6-8 hours.  This did not happen!  There was no way she would wear a patch to school. We tried on the weekends but 8 hours usually didn’t happen.  

At her one year checkup with the ophthalmologist in March, her vision had improved to 20/40 +2 in her right eye and 20/25 -2 in her left eye.  Her amblyopic eye had improved and was now working about 80% of the time.  By July however the improvement stopped, and had gotten worse in her amblyopic eye.  We were told to patch all of her waking hours.

This was a wakeup call to me, so we started enforcing the patching and not taking “no” for an answer.  I have had to enforce her wearing a patch out in public, even if people stare or make comments.  I bought a new DVD, books about other kids who patch, showed her patches and made and bought just about every patch under the sun.  It seems to be working, because she isn’t fighting as much.  I can tell when she is nervous in public though, because she will growl and say “I am a pirate” and look scared.  I would like to find another girl her age to video chat so she can “know” someone with the same problem, or maybe get a local group together in our area.  She seems to be excited about these possibilities.

I have no doubt she will not be patching in school.  But hope it works none the less.  We have another appointment this week, so we will see if her commitment is paying off.  I feel bad for her.  There are so many problems she could have that are worse, but for her this is real and is seen as the worst it gets. 

 In a world of looks she is defined by the direction of her eye, or a piece of material covering it and not by the great person that she is.



Thank you Antionatte  we wish Krystal the best of luck and hope you will keep us updated to her progress in the future. 

 

3 comments:

  1. It is great to hear about Krystal's experience! I have one child with amblyopia and one with accomodative esotropia so I understand very well what you are going through.

    Keep trying with the patching. We did patch at school when my son was in 5th grade. It took some major convincing. I would definitely recommend taking her patches to class, letting her classmates try them on, and having a "show and tell" about it. At one point, I actually bribed my son with $5 to try just one day of patching at school. He was more worried about the potential comments than any actual comments he ever received. Just wearing it one day was enough to show him that no one was going to be mean about it.

    If you end up patching at home only, I would definitely recommend doing activities during that time that actively use the vision. We used a Kindle to do reading time and progressively decreased the font size as his vision improved.

    Good luck Krystal! You are doing so well and such a good thing for your vision!

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  2. I had to make a short comment to let you know my sweet 6-year old daughter has the same diagnosis and we too struggle with the physical appearance stigma that unfortunately we are all subjected to in this world. We are off to buy yet another pair of glasses to start the school year with. I will do anything to help with her self-esteem :) Best of luck to you and your wonderful daughter xoxox

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  3. Good luck Krystal! My 7 1/2 year old daughter had to patch at school last year. We decided that it was best to limit the patching to the classroom only. She did not wear it for Pe/music/lunch/recess or anything outside of the classroom. She felt comfortable wearing it in the classroom with her friends. In the beginning her teacher introduced the patch to the class and asked them to come see what they were all about. Her teacher explained that Abby had to patch to make her eye stronger. The whole class was wonderful and there were not ugly comments. I hope Krystal can find a happy medium. Best of luck.

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