Monday, June 28, 2010

Riding the Amblyopia roller coaster, and the dreaded regression monster

In February 2010, my daughter had her 1 year appointment since being diagnosed with Amblyopia. At each appointment at 1 or 3 month intervals she had continued to receive good reports. Her weak eye got better each time and I could see the patching was working. Her doctor was very pleased and it was so exciting to see her be able to read even the small letters on the eye chart. It was the highest of highs when the doctor let us know that we could stop patching and take a break. He did say that we might be done forever but maybe we'd have to patch again down the road. Still, it was like we had climbed a mountain and made it to the top. My daughter had done it. She was beating Amblyopia! I always knew she could do it. I could taste victory and it was sweet. We scheduled a follow up and we packed the patches away in a gallon size zipperseal bag.

It was like living a "normal" life (what is normal?) without having to be sure to get in patching time each and every day and bank those hours.

Four months seemed to fly by very quickly what with school and extra activities. She graduated from preschool and shined at her dance recital. Before we knew it we were back at the eye doctor for her scheduled checkup.

Today, when she sat in the chair while the assistant did the pre-work for her visit. I could sense it immediately. When asked to occlude her eye, she cheated. The assistant switched to a larger eye cover she couldn't peak around and she immediately tried to turn her head, tilt it, she couldn't see. She made the letters larger and she sat there quietly. Finally she got to a large enough set of letters and my daughter announced "the letters are too blurry". She asked if maybe her glasses were dirty and we could clean them. Of course I wanted to believe that was the case, I knew it wasn't. We cleaned her glasses and she proceeded with the test.

She couldn't read the letters.

It was like diagnosis day all over again.

I sat there trying to be strong for my daughter and thought to myself. How could this have happened in 4 months? How did I not know she wasn't seeing again? What the heck!

From the looks of today we will be resuming patching and the likelihood of a new stronger prescription in her glasses is in her future. The doctor wants to do a full dilated exam to get the big picture and we'll come up with a plan. Since Belle had a tough time with the atropine drops and they caused her to get flushed and her heart to race, we are going to use Cyclogyl this time. He gave me a prescription so I can give them the night before and then the morning of her visit back which is scheduled for 2 weeks (we are going away next week otherwise it would be next week).

Glasses, Patches, Surgery? All or some of the above are just around the bend.

Here we go again.

What a rollercoaster ride this is.

5 comments:

  1. I know this feels like a huge disappointment. Hang in there! So much of growing up is two steps forward, one step back.

    Hugs to your both.

    ReplyDelete
  2. How old is she again? Perhaps she & Aiden could be pen pals in their summer adventure.

    ReplyDelete
  3. She's 5. but she can't read/write very well.

    ReplyDelete
  4. Oh dear. Hang in there! My son was just diagnosed in January and we have just in the past two check-ups had progress. It is heartbraking to see them struggle to read those letters isn't it, and just thrilling when they read letters on a smaller line than the last. Hope your girl has good news at the next check. :)

    ReplyDelete
  5. I don't know much about Amblyopia but I am sure it is a very difficult situation especially for kids. My daughter got to wear eye glasses at the age of five because of astigmatism and it is such a pain to see her that way. At first I was hesitant that she wears eye glasses but I am thankful that her vision is improving now and I am glad that her study is not affected with her condition right now.

    ReplyDelete