little four eyes

 My son Nicholas has ectopia lentis, a congenital condition that causes his natural lenses to move, or dislocate, from their normal position.  As a result we’ve had to manage high myopia, anisometropia, amblyopia, and the associated patching, glasses, replacement glasses, and even more replacement glasses since he was 6 months old.  A few months ago I posted about his surgery to remove the natural lens of his left eye and replace it with an intraocular lens.  Back with an update. 

Pleased to report that the healing / recovery throughout the intervening months has been uneventful.  The new lens is well centered, clear, and most importantly..providing good vision.

Prior to this surgery, N’s prescription has progressed to  -8.5 R and -23L and we worked diligently with his PO to ensure the patching routine was followed and we adhered to all follow up and recommendations.  This past week we were very pleased to experience the results of all the effort. 

After 4 years of prescription changes, extended patching, a surgery, some stiches here and there…and all the other challenges associated the PO shared with us the following…20/30 (with correction) bilaterally.  A first for us…ever.  Not only that, but patching time is reduced!   We go forward knowing the effort invested helped to maintain vision to the best possible given the circumstances, the right eye remains stable, and with a little luck and continued persistence his vision will remain the best it can possibly be.

It’s been some time since I last posted an update regarding my son Nicholas and his experiences with glasses and patching.  N has ectopia lentis, a congenital condition that causes a laxity in the fibers that hold his lenses in place, as a result the lenses can move, or dislocate, from their proper position.  This has led to a high degree of myopia as well as anisometropia.  Anyhoo..after several years of success with patching to maintain vision to the best possible, we learned a several weeks back that the lens of his left eye has moved to a position where it is no longer providing useful vision.  (He’s -8.5 R and -23L.  Lately we’ve not been able to gain acuity beyond 20/200 L)

So..we’re gonna have it replaced.   Huh? 

I always thought such things carried a lifetime warrantee.  Such is not the case it seems.  Surgery is tomorrow. The surgeon will work to secure the supporting apparatus of the inner eye and hopefully implant an IOL “in the bag”, complex terminology for “right where it needs to be”.  Otherwise, suspend the new lens in the place where the bag used to be, if things go differently.  A new frontier for us to say the least.

I’ve written infrequently, but visit this site often, sharing and leveraging the collective experience of this community.  Hoping those who may have had experience with surgery could share some tidbits of advice.  What’s the post surgical period like? Luck with maintaing the protective cover in place? etc.  Will see you on the flip side and let you know how it went. (personally..hoping he gets the one with the bionic sound effect…) 

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

My name is George, my wife is Alexandra, and our son’s name is Nicholas. Nicholas turned two as of August of this year. Our experiences with glasses, patching, and pediatric ophthalmologists began when Nicholas was about two months old.

While changing his diaper one weekend morning, the sun happened to be shining in on his face when we noticed what can only be described as a slight ‘jiggle’ in his left eye. We looked, looked again, looked a third time…and as any new parents might do…we panicked.

Within a very short time we had placed a call to our pediatrician’s on-call, and after a worried discussion using descriptors like ‘jiggly like a sunny side up egg’ and ‘wobbly like jello’ we had the on call doc stumped. Monday morning we were in the doctor’s office and our pediatrician…also somewhat perplexed…agreed that our descriptors were well chosen. He had not seen the like before and referred us to a Pediatric Ophthalmologist.

What followed over the next couple of months are as follows:

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