Monday, August 27, 2012

Adam and Aimee's Amblyopia story - Amblyopia Times Two

The following is reader submitted by Carolyn who shares the journey of her Aimee and Adam - siblings with Amblyopia. 

My amblyopia story starts in 2008 when my first child, Aimee, was just a month or two old.  Her then-pediatrician felt she was going cross-eyed a little more than most babies and suggested I have her checked.  The optometrist told me that because of her young age, we needed to wait and see if it corrected itself.  It appeared to and that was the end of that.... for a few years.

In late 2010, when Aimee was 2 1/2 years old, we began to notice the eye crossing again.  It started to happen more and more frequently, and I remembered her doctor's concern when she was a baby. When our insurance changed over in the new year, I began looking for an eye doctor.  Unfortunately, this was easier said than done.  I hadn't been impressed with the knowledge or care of the optometrist we'd seen in '08, and I decided to seek out a pediatric ophthalmologist - eventually I found one that also specialized in strabismus.  We had to wait all the way 'til March 1st for an appointment, but it was worth it to see someone I felt could really help.

By that point, Aimee was just a few months shy of 3.  They dilated her eyes, which she hated, but otherwise she was very cooperative.  It didn't take long before Dr. B. told me she needed glasses, which I had sensed but didn't really want to admit.  And then she added that she'd need to wear an eye patch too.  Not needing corrective lenses myself, I felt clueless picking out her first pair of frames, but we finally settled on a basic pink pair.

During the 3-week wait for the glasses, we took a two-step approach to explaining this to Aimee. First, we talked up the glasses.  We called them her "special Aimee glasses," emphasizing how pretty and pink they were, and pointing out all the people in the family who wear glasses.  When she seemed comfortable with that, we tackled the idea of the eye patch.   I'd ordered the Ortopads with the girly designs on them, so we told her it would be like wearing a cool sticker on her face.  We also compared her to One-Eyed Betty, Mrs. Potato Head's character from the opening scene of "Toy Story 3", who wears a patch.  She seemed to understand and accept it.

It wasn't so easy for me as her mom.  I worried that my beautiful little girl would be hidden behind a patch and glasses; that those would be the first and only things people would notice.  I knew that of all the health problems she could have, this was relatively minor and treatable, but it still broke my heart.  Nothing was worse, though, than putting on that first patch and hearing her start crying, "Mommy, I can't see, I can't see!"  I could have cried too.

It took me awhile to get used to her new look, but Aimee adjusted easily after that first day.  She never asked to take off the glasses and very rarely fought me about the patch.  She wore it full-time for only 2 months and then had improved so much that we cut back to half-days.  Her eye stopped turning with the glasses on, which meant she was not a candidate for surgery, and things were going well.

The hitch in the story, though, is that Aimee has a little brother, Adam, who was 11 months old when Aimee got her glasses.  Not long after the first visit to Dr. B., I was reminded I have an uncle who patched as a child, and it came out that my husband's grandfather wore one too!  Given that history, and his patching sister, Adam was given a 50/50 chance of having the same problem.  When he was 21 months old this past January, Dr. B. decided it was time to get him some glasses too, and also begin patching.

It's a funny thing with second children.  I adjusted to the way Adam looked in glasses in no time. And although I was disappointed that he hadn't escaped amblyopia, there was no heartbroken feeling this time around.  For his part, he adjusted with just as much ease, barely seeming to notice the patch and even asking to keep his glasses on during nap time!  I guess he probably couldn't remember his big sister without hers, so to him it was just natural.

Having them both patching has certainly been an experience.  They've never patched the same number of hours at the same time, so it can be tricky to keep track, but I'm thankful they both patch on the same side!  And neither has ever given me trouble if the other got to take his/hers off first.  They even went through a cute phase of wanting to wear matching patches every day!

Aimee is now 4 and her vision is 20/20 in both eyes with her glasses on.  There is still hope that her body will learn to straighten the eye without glasses and she could "outgrow" them someday. After 17 months of patching she was just allowed to stop.  We go back in November to see if her vision has maintained without it - fingers crossed!  Adam is a few months shy of 2 1/2 and is down to just 1 hour of daily patching.  He's been given "homework" so he can learn the pictograms to begin reading eye charts.  I've been told he will always need corrective lenses, but his eye should never develop a turn because we caught it so early. 
And that's where we stand in our amblyopia journey, times two!

 Thank you Carolyn for sharing your children's journey with Amblyopia.    Congratulations to Aimee on graduating from the patch after 17 months!   Please keep us posted on how Adam does - those eyecharts sure are tricky!! 


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