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.

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…) 

(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

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:

We saw the PO, and following an exam where lenses with ever higher climbing numbers …

-4..-6..-7 were passed over his eyes…we were told that Nicholas was very nearsighted (-7.5 R and -11 L), then following the dilation and slit lamp evaluation…that his lenses were detached. Huh? What?!?

It got better..detached lenses, we were told, at so young an age may be an indicator of some serious underlying genetic disorder…Marfan’s…Homocystineuria…to name the primary two. The PO recommended evaluations to rule out (or confirm) these genetic factors, indicating that glasses would be very necessary, though presently N was too young. The optical diagnosis: Ectopia Lentis, High myopia, amblyopia, and anisometropia. (it’s Google time…) Double Huh? Double What?!?

What followed next was a series of genetic tests, a bone scan, blood draws, and measurements of all type… long talks with a genetic counselor and a physician specialist in genetic disorders. Many a long night scouring the internet. (Dad’s a neurotic…) Not fun.

Marfan’s is a condition with some potentially serious complications. Homocystineuria, scarier still. (A google and a read will fill the interested in.) The long shot in the list of disorders was ‘Ectopia Lentis et pupillae’ or ‘Idiopathic Ectopia Lentis’ i.e. detached lenses with no discernible cause.

One after the next the results returned negative. Our genetic counselor reassured us that we ran all the tests there are…oh yeah…a gene sequencing too..for Fibrillin defects..(there’s another Google for you…). In the end, we cleared all hurdles. Nicholas it seemed, had detached lenses, for reasons unknown. Idiopathic Ectopia Lentis.

The next PO follow up wasn’t until six months of age, so dad filled the time with a near obsessive scouring of the internet. Mom, decidedly less neurotic, met everything with a positive outlook.

At the six month visit, we were instructed that N would have to patch 2 hours daily to force the use of the weaker eye, we chose glasses, discussed lenses…might be thick but the technicians would try to cut the thinnest possible profile…the PO reassured us that though unpredictable (lenses might detach further or all together)…the best approach was not to worry too much, monitor closely, and live happy. …“he’ll be a little boy in glasses”.

About a week later we picked up the frames…metallic, mocha, Disney, cable temples.

While N was now only six months…when the glasses were first put on…it was we like to think, quite a revelation for him. There was a somewhat obvious start…at least as much of a start as a drooling six month old obsessed with eating can produce while strapped in his car seat…as he saw things much more clearly for the first time. At least that’s as much as we can surmise.

Fast forward…Nicky is now two. We patch diligently every morning. He wears his glasses all day every day. We have had our share of face plants and head bumps, bent frames and popped lenses, even one trip to the ER for stitches after a not too friendly encounter frames/face-vs-coffee table. He’s a happy and robust kid. I think we’ve been lucky in a sense that we caught it when he was so young…the glasses and patching are well ingrained in the daily routine. We’re cautious that he might fall…hit the lenses… but try not to be overly so. As he’s grown, so too has his self perception and an ever increasing awareness that things aren’t quite the same as with other kids. He lately really dislikes the patching. Still, we’ve managed to overcome the objections …mostly with reassurance…and he wears it for the required time. The glasses, luckily, he’s never really objected to as he clearly perceives the difference.

With several PO visits now under our belts (the latest 9/11), N’s prescription is unchanged…he sees great…eats great…has developed near manic obsessions for Thomas the Train and Elmo. We understand more now then we did at the onset, that a full detachment of the lenses may occur at some point…though if or when is anybody’s guess…but more importantly that most any eventuality can be overcome with good results. (yay Google!)

When all is said and done, post obsessive googling, and the now mostly passed scared-worried-guilty-what if feelings, Nicholas is exactly that…a little boy in glasses.