Wednesday, November 23, 2011

Abby's journey with Amblyopia

Thank you Sheelagh for sharing your daughter's Amblyopia journey.


My daughter Abby was diagnosed at the age of 4 1/2 with strabismus and amblyopia. Her right eye was seeing 20/30 and her left eye 20/200 uncorrected. The way we found out was a train wreck. At Abby's four year old well check she failed the vision screening with her left eye only. The nurse said it was behavioral and that not to worry about it. I did worry! I followed up with my family eye doctor shortly afterwards. He could not even finish testing her, because in his words "she was legally blind in her left eye". How did we as parents miss this? She played soccer, but not very well. She was learning her sight words, but not reading. She took ballet and seemed to do fine. She did squint her left eye alot and turn her head. There were frequent headaches, but not complaints of not being able to see. How did I miss this?

I had so many questions and he had so little information for me. I left the office not knowing what to do next or who to see. Hindsight is 20/20. The optometrist recommended a developmental optometrist who was local. Not knowing to much, I followed up quickly with her and learned alot during our first appointment. Abby was fitted with glasses and we began patching for 2 hours a day. Initially it was incredibly hard on all of us. The developmental optometrist set us up for at home vision therapy. We met with a vision therapist once a month for a follow-up and more at home exercises. This continued on for 6 months. After patching for 6 months Abby's vision had become better. She was now 20/20 in her right eye and 20/80 in her amblyoptic eye.

At this point, we decided to do weekly in office vision therapy and fitted Abby for a contact lens. Abby wore the contact lens during the week and her glasses on the weekends. We also used an occluder contact lens in her "good" eye instead of using a patch. This worked well for a while. After 6 months of in office vision therapy once a week with daily vision therapy at home Abby's eyes had improved. She then had achieved 20/20 in her right eye and 20/40 in her left eye. Abby graduated from vision therapy at this point. It was the summer before kindergarten. We still had to wear a contact lens in her left eye, but no occlusion therapy was ordered. We had a great summer. Part of me wondered how her eye's were doing. Abby started kindergarten and she did fabulous. During winter break of kindergarten we went in for a progress check. Abby's eyes had changed. Now her left eye was seeing 20/50! We were not told to patch at this point. We were to come back in another 6 months for our next progress check.

One year post vision therapy and patching we returned for our progress check. It was not good! Abby's vision was still 20/20 in her right eye, but her left eye had decreased to 20/80 and there were still signs of amblyopia. I was extremely upset. Very unsure of how all this happened. Especially since vision therapy is expensive and was not covered by our insurance. The developmental optometrist recommended another 6 months of in office weekly vision therapy. Not sure what to do next, I paid for the 24 sessions and started questioning myself. Somehow in this process, we were never encouraged to see an Ophthalmologist. I owed it to Abby to leave no stone unturned. I felt somehow that this was my fault.
We waited for 4 months to see a pediatric Ophthalmologist. I was hoping that she would give us better news. I was mistaken. It was one of the worst days yet. The Dr. told me that since Abby was almost 7 years old, that her visual system is set. Basically, I should have come to her sooner and that none of the money or time spent on vision therapy was worth it. I felt like the world's worst mom. She recommended patching for 2-4 hours a day for the first 6 weeks. I left the office feeling horrible. I went home, I called the developmental optometrist who basically said the 2 fields are like oil and water. Of course, I had that sinking feeling that I needed to follow the Ophthalmologists' recommendations just to see. After all, I had tried it one way and it didn't stick!
At our 6 week check up Abby's vision did change a little. Her left eye was now 20/60. The doctor now has us patching for 4-6 hours a day. Abby is now 7 and such a trooper! She patches for 2-3 hours a day at school. Her teacher has set aside a safe in the classroom time for her to patch and do work. Her classmates are wonderful about this. I think all first graders are such wonderful little people! The patch comes off right before lunch and then we patch again when she get's home for 3 hours. **we use the Ortopad Elite adhesive patches and love them** We don't go back for our 8 week follow-up until mid-January of 2012. I am praying, crossing my fingers and toes that this works. If her acuity has not changed then the Ophthalmologist wants to taper the patching and eventually stop all together.

On the flip side, we have stopped the vision therapy for now. We still have 12 weeks that are left of our paid sessions. We had a meeting with the vision therapist last week and Abby has such great stereo now with her vision. She can see in 3D and her eye turn is very controlled. Her left eye is still turning off at times and this is what we are addressing. I am sitting on the fence. We have achieved alot with vision therapy and minimal patching alone. It has not made the ambloyopia go away, but it did help Abby out alot. I hope that by patching for 4-6 hours a day and not doing any vision therapy, that we do not undo any of the good that has come of vision therapy.


I do hope that her acuity improves. Achieving 20/40 or better in her left eye is ideal. Keeping it there and not backsliding again is a must! Having a child with any disorder is very challenging. As a parent you want what is best for your child. Having a child with amblyopia and strabismus has been an adventure. There is tons of research out there and lots of opinions and case studies, but not very many Ophthalmologists' who agree with vision therapy. It would make it easier if both medical practices were on the same page. I whole heartedly think that vision therapy did help Abby. She has great eye teaming now and wonderful stereo vision. I only hope that we can improve her vision and decrease her acuity without disrupting what she has achieved.

3 comments:

  1. Your Blog is quite amazing! You are saving a child's quality of vision somewhere by raising awareness of Amblyopia and the importance of early treatment. Please feel free to check out adveyes.blospot.com as I have other Ophthalmic diagnosis and explanations of treatment. Keep up the good work!

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  2. Abby update: I will keep this short. After patching for 6 hours a day and no vision therapy we have improved our acutity in the amblyopic eye to 20/50 whole chart and 20/30 single letter. This is good. However, her eye is turning more (where it was not turning at all before) and she has lost some of her stereo. Bummer! We are going to continue for another 8 weeks with the patching and reassess then. We have a new contact lens prescription with a lower power (yay). Hopefully in 8 weeks we will not have lost our eye teaming or stereo. I am hoping that we will have improved our acutiy even more and at that point can begin vision therapy again. This adventure continues and boy is this a roller coaster that I would like to get off of soon!

    Sheelagh

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  3. My daughter who is close to age 6 was just diagnosed with amblyopia in one eye. I am still processing it all. Wanted to ask you quickly.. How did you get her in contacts? I didn't know that was possible for a young child. I am interested!

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