A few weeks ago we left the PO’s office with some discouraging news. Nicholas’s left eye was not doing as well as in previous visits. Upon reading the eye chart, he was only able to identify the figures to 20/50 R and barely 20/200 L. We were 20/50 in both just 3 months prior. While the prescription had not changed, the left eye was not doing as well as previously. Our PO ordered increased patching, up from 2 hours per day to 4-5 hours per day. We left with a deflating ‘we may have to discuss removing the lens at some point’ close to our appointment with the PO.
(Our son Nicholas, 3yo, has Bilateral Ectopia Lentis (dislocated lenses), with a Rx of -7.5R and -18L and anisometropic amblyopia. He’s been in glasses since 6 months of age, and patched 2 hours daily until this point.)
Fast forward, we’re business as usual. A couple mornings of increased objections, but we are able to achieve the required 4-5 hours, with assistance of his daycare staff, and a few well timed ‘Dr. Nelson says..’ to aid in overcoming any reluctance.
(His repertoire of tactics has increased exponentially with age… “I have dirt/dust in my eye”, “no patch today”, “I just wore my patch already”, along with a host of grunts, groans, pains, and fits..real or feigned…but we always come out on top : ) despite his efforts.)
In the past 10 days or so, we began to notice some differing behavior. A pirate squint here, pulling the weaker left eye closed there, some random grimaces and rubbing about the eyes, particularly the left. We thought at first it was some transient adjustment to the patching…adjusting to the longer hours..or maybe light sensitivity (we were at the beach…so maybe the glare after patching was a bother?), but the behavior persisted.
Upon returning home, and an additional few days later, the behaviors continued…a definite change we agreed. Better to err on the side of caution. I left a message for the PO, voicing our concerns about a possible change in vision in the left eye. Call returned, we were scheduled for a visit next day. Meanwhile, our minds begin the process of what if, what next, and so on. Has there been a shift of the lens? Is the brain shutting down the left eye? What if it’s time for the lens to come out?
To the doctor’s office yesterday… For the first time N went in, climbed up and sat down in the chair all by himself. Lights here, look there, follow this, cover this eye, now that eye, put these on, etc ..
We both sat waiting nervously for the doctor to voice some negative finding.
“Ok now Nicholas, do you want to read the pictures for me?”
There’s never been a response before, and then only after much reassurance a barely whispered naming of objects.
Yesterday, “Yeah.”
Left eye covered. “Bird, cake, hand, phone…” 20/30 Right.
Now right eye covered. “… “
Uh, oh.
Then, with a little encouraging…“Bird”
Down a line..”Cake. Hand.”
Down again.. “a bird, a cake, a hand, a phone” 20/50 Left eye.
From 20/200 to 20/50 in the intervening three weeks since increasing the patching.
In the end, the behaviors we observed were more a three year old being a three year old..living..learning..experiencing through his two eyes. Correct to side with caution, was the PO’s counsel. But all things considered he’s doing excellently. We’ll take it and keep moving forward.
Go Patch!
eye chart
For Little Eyes 
YEAHHHHHH!!!!! HOW EXCITING!!!!! I am praying for one of those visits. =) It is nice to know these annoying patches do work!
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That’s fantastic news George! We also had success with patching although not quite like yours!
My daughter Emma started patching in March – after getting her glasses she was 20/50 in her right eye (which is her amblyopic eye). Our patching goal was for 4-6 hours a day. We went in for a check in May and were thrilled to find out her vision had improved to almost 20/25 in her right eye! Her left one stayed at 20/20.
We have continued to patch (for shorter hours though) and subsequent checkups show her vision is about the same. But we are happy with her progress nonetheless!
So yes, amomofelly, the annoying patches do work!!
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Yay!! That must have felt great to hear him reading those pictures!
And I’d never seen those particular eye chart pictures before, but I’ve seen them referred to twice now today.
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Ann – they used a version of this test with Elly when she was younger. Since our office has it on large computer screens they can switch the order of the pictures or letters, so that the little ones don’t “memorize” what comes next. They can also take these pictures and put them in a “box” or rather outlined with 4 lines that almost make a square and I believe it helps some kids with eye issues be able to isolate the picture easier.
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We were thrilled not only that our concerns were allayed for the time being, but also that he relented and read the chart…voluntarily no less. Given that we’ll be seeing the PO for a long time to come, it’s good that he is growing more comfortable.
AnnZ
I dont know the name of the chart off hand..but it’s for use with the younger set…along with the ‘which way is the E pointed’ set..
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So great to read this!
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Elly was in a bad mood today and they brought out this chart to see if she would participate in reading the pictures rather than the letters and it reminded me of this post. She kept calling the horse a dog and thought the birthday cake was funny. How is your little one doing?
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amomofelly,
Nicholas is doing great. Vision has been stable these past months and still in the 20/40 , 20/50 area. Haven’t had to replace any frames or lenses, stitch anything, or unbend in a while now.
On other fronts.. We’re through the holidays having learned to combine the words ‘presents’ and ‘more’ in constructive ways. 🙂 Nicholas has also taken up a few sports of late (we’d signed him up for the toddler version of a sports class at daycare…think foam.) and has become quite the batter and touchdown runner..
Best for a Happy 2010
GeorgeB
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My daughter Phoebe also has an idiopatic ectopic lens in the 2 eyes. Her vision is also stable. She was diagnosed when she was 3 years old. She is know 9 years,and next week we have to go again to the doctor. I hope everything is stable. Her vision is 20/30 and 20/40. She came from far. The first time we went she was 20/70 and 20/100. We have patch every day since she was 3 years old for 3 hours. We had stop one time for 4 months and vision when back to 20/70. She had one time little bit a high pressure but now it is back to normal.
I really can related to your story George. I was and I am still the same. Every time I have to go to the eye doctor, i am so nervous.
suzy
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Good to hear from you Suzy. Ectopia Lentis is not something you hear about every day so it is encouraging to hear feedback from others as the contacts are few and far between. We discovered the EL when Nicholas was about 2 months, and he’s been in the glasses since about 6 months. Currently he is still stable at -7.5 and -18 and we too patch every day, between 4 and 5 hours. The more I’ve learned about the condition, the less nervous I’ve become (but its always back of mind). Looking forward I imagine there will come a time when things will change, but for now he’s 3 and a half and full steam ahead. I hope you’ll be back often, or that we could exchange emails, as I’d like to learn more about your experiences.
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That is great to hear from you back too. You can always email me at comhais@ccf.org. So we can stay in contact. Like you said there are not many people with this condition.
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