little four eyes

Janine has asked me to post a survey about eye patching, she writes:

I am the mother of a little boy who is having difficulty accepting his glasses after 4 months. We have now started to patch and this has just added to his, and his Mummy’s and Daddy’s, frustration. Added to the worries and questions that we have about about his sight are those regarding what people see when they look at him and how he will feel about himself as he gets older (I won’t elaborate as I know that each of you have asked yourself the same questions at some point in your journey).

And so I decided to write a book for my little boy that celebrates all that he is. I think it’s pretty good and plan to submit it to a publisher, but need to do a bit of research first. Please help me to get started by filling out this quick survey.
Your time and effort is greatly appreciated.

Click here to take the survey

(Ann Z here), I wanted to note that while there are a lot of books about glasses, there are very few that talk about patching – we only have 4 on our list.  As a librarian, I think having more books for our kids is a fantastic thing.

Updated: I’ve added Vision Therapy as a choice, but it’s not showing up yet.  It should show up shortly.  Sorry for that, I knew there was something I was forgetting when I hit publish.

One of our readers, Heather, asked if I’d do a poll about how many children with accommodative esotropia end up patching.  I’m expanding the poll just a bit to include other treatment options.

If your child has accommodative esotropia (partial or full), let us know what treatments you’ve done.

January is Glaucoma Awareness month.  I hope to feature stories this months about children with glaucoma.  Amanda was kind enough to share this post that she wrote for her son, that was originally published on her blog See the Distance. – Ann Z

My son, Easton was born with a severely cloudy Cataract in his left eye.  At 3 weeks old he had surgery to remove the Cataract and his Lens.  It was after the surgery that we then discovered the Cataract was just a symptom of his overall abnormal eye.  He was diagnosed with Persistent Fetal Vasculature.  Along with abnormal eye structures and a cataract, his eye also is at very high risk of reoccurring Glaucoma for the rest of his life.  In order to maintain function and attempt to restore vision in his eye,  he has been wearing a contact lens since healing from the surgery and wears a patch over his “good” eye approximately half of his wake time, 6 hours.  He is currently 15 months old and it most definitely has been quite a journey getting to this point.  We recently found out that his Glaucoma has flared up and are in the middle of a battle with it right now.  Reading the blogs of other parents in similar situations is so comforting to me.  As a result I began blogging our journey approximately 6 months ago and it has helped immensely just to get it all out.  As this New Year begins I wanted to share one of my most popular posts as a way of reaching out and giving back to a community who has given so much to me.

This post was actually written Sunday, October 16, 2011… but it still rings true for me everyday.

Dear Easton…

My baby
My boy
I love you
so much
beyond what words
can express.

You are fearless.
You are full.
You are endless.
You are endearing.

You can do this.
There are so many days
when you make it
look easy.

But I know
you know
that there is a
harsh
cold
reality
to the days
that arn’t easy.

Every morning
Every moment
starts
and ends
with
the eye.

The eye
that can see
that is covered up
that wears a sticker
that bends your eyelashes down
that irritates
that itches
that rips your skin when removed,
that eye
is precious.

The eye
that can’t see
that is pulled open
that is poked
that is rubbed
that is wearing a contact
that is learning
that is growing,
that eye
is seeing.

I am sorry.
I am so sorry.
That you have to
endure.

I am sorry.
I am so sorry.
That nothing about this
is easy.

I am sorry.
I am so sorry.
That your vision
comes with a price.

But Baby.
My sweet
loving
lauging
little boy,
Mommy loves
you.

I love you
so much
that I will do this
for you.

I will continue
to wake up
everyday
and do this
for you.

Balance
Strength
Endurance

Easton,
Mommy is doing
the best she can.
I am trying.
I am sorry, baby.
I love you.

And when we have
bad days
you have to know this,
I do this
because
I love you.

Someday
we will look back
and I pray
all this is worth it.
Because you deserve
a chance
at the very least
you deserve
a chance
to have the best
possible
vision.

I love you.
I am so proud
of you.
Keep seeing the distance baby.
See the Distance.

It’s long bothered me that some of the terms or phrases related to children’s vision are  inaccurate and sometimes even mean very different things, which leads to all sorts of confusion.  Here are the ones that I can think of, though I’m sure I’m missing others:

Squint

The one that trips me up the most is the word “squint.”  Until we started our journey with Zoe’s strabismus, I always thought squint meant having your eyes mostly closed, like you do when you’re in bright sunlight.  Turns out that squint is also a synonym for strabismus and having your eyes not in alignment.  This can lead to all sorts of misunderstandings when people talk about their child having a squint, or squinting to see something.  For instance, before realizing there were two definitions, at one of Zoe’s eye appointments, I tried bringing up the fact that Zoe squints one eye in the sun, that is, she closes one eye most of the way, leaving the other open.  Zoe’s ophthalomologist thought I meant that Zoe was crossing an eye whenever she was outside.  I now try to avoid this word altogether.

Zoe exhibiting two different "squints": eyes not aligned (left), and looking through eyes mostly closed (right)

Lazy Eye

The phrase “lazy eye” is similar in that it can mean different things to different people.  I think most people in the eye care industry consider lazy eye to be a common phrase for amblyopia – when one or both eyes doesn’t see clearly even if it has no defects, or even if any refractive error is corrected with glasses or lenses.  Never mind that “lazy eye” doesn’t really accurately reflect what’s happening with amblyopia, since it has nothing to do with an eye being “lazy” and everything to do with the brain not paying attention to the visual input of the eye.  But beyond that complaint, a lot of people hear “lazy eye” and equate it with strabismus, since you see one eye focusing on an object and the other eye looking elsewhere (being lazy?).  And I’ve heard other people refer to ptosis (drooping of the upper eyelid) as a lazy eye, again, presumably because the droopy eye looks “lazier”.   Further confusing things is the fact that both of those conditions can lead to lazy eye or amblyopia, but they’re not the same thing, and the treatments can be very different.

patching for amblyopia

Strengthening the weak eye

Related to treating lazy eye is the phrase that I find myself using a lot: “strengthening the weak eye”.  When a child patches the amblyopic eye, we often explain that they’re doing it to strengthen that eye.   In reality, though, we’re trying to get the brain to recognize the visual input from that eye, the eye itself isn’t being strengthened.  It’s misleading in a couple of ways.  First, when people hear “strengthen” they often think muscles, and I wonder if that adds to the confusion of thinking that lazy eye has to do with eye muscles and strabismus.  It can also lead to the misunderstanding that patching might make it so that the eye won’t need any correction any more if the patching is successful.  While patching can improve the visual acuity, if that eye needs glasses to see clearly, patching won’t fix that.

and on a much lighter note

Finally, on a lighter note, a reason to know the correct terminology for parts of glasses was posted over at Not Always Right (a blog about working with customers who aren’t always right).  I’d recommend using the term “temples” or “ear pieces” when talking about that part of glasses, not “legs”.

For the crafty minded, or those looking for some crafts to work on with their kids, here’s some glasses-related crafts…

• Make a glasses case: Amomofelly pinned this link to instructions for making a simple glasses case that can be decorated however you or your child chooses.
• Turn old glasses frames into picture frames: I found these instructions a long time ago. I think it’s an interesting I idea, though with kids’ glasses, the pictures would be so small.
• Patches: There’s a ton of instructions for making your own patches to go over your child’s glasses, and the great thing is that they can be decorated to fit your child’s personality and likes. The big thing to be sure of is that the patch provides complete occlusion, and your child can’t peek. Here’s a couple tutorials, you can also google for eye patch tutorials or eye patch patterns:
• Using craft foam – pattern developed by Amomofelly and posted here a year ago.
• Using felt – from Lucykate Crafts

Anyone made any of these and want to share a picture?  Or have any other glasses-related crafts to share?

Cyndi Lee left this as a comment this morning about her experiences as a child with a cataract.  She gave me permission to re-post it here.  Many thanks to her for sharing.  -Ann Z

This is my first time writing anything about my cataracts….  I’m now 41, but I was born with a cataract only in my left eye.  My right eye is still 20/20 (God is fair) and as much as I’ve joked to my doctors that they should use me in their thesis, no one takes me seriously.  For one, I know the difference between being legally blind vs 20/20 and I can EXPLAIN to the adult world the cons and pros.  So for those who are in need of some sanity for their child, read on.

A cataract is exactly like seeing objects underwater in a swimming pool.  You see the object and can identity but it’s not crystal clear. I also had a lazy eye – that comes with the territory with most cataract cases in early childhood due to the lack of muscle usage. I’ve had a semi-successful surgery only because I waited too long.  The procedure was not as advanced as it is today to fix the lazy eye syndrome related to cataract, but still I’m so grateful and happy for the surgery.  The early years, I had to wear the “pirate” black eye piece to school which I endured great ridicule from the students and from which I still have nostalgic scars, BUT my strong parental influence and my brother being next to me had made all the difference in the world.  Although in hindsight I would tell a “story” behind the patch, such as “my eye needs rest because I have extra vision like superman”….Something to that line to ease the ridicule…comedy is the best remedy. Encouragement and making sure the eye patch is “fashionable” due to the fact no one else has it makes it special!!  Having a degree in fashion has definitely made me realize that being different is the key!  It’s the love, support and encouragement the family shows that sketches out the future of the child.  My mother still carries the guilt as though she had done terribly wrong during pregnancy but I always tell her I’m blessed as I have a 20/20 vision on my right eye versus the astigmatism my brother has on both eyes.

I underwent a retinal detachment surgery 3 years ago, I went in for a normal checkup and went into the emergency room that night.  The damage was severe but the surgery was very successful. I did lose some sense of depth perception and some peripheral vision but my eyesight improved by one line on the chart which the doctor couldn’t explain.  No one had ever educated or warned me about the retinal detachment that are prone to happen to people with cataracts, so I would advise any parent to always remember to ask during checkup as their child gets older.  I did see flashes during the night while driving and spider web like floating around but thought it was just due to aging.  Don’t be alarmed as I still have a tiny “floater” after the surgery but I received results from two specialized doctors and they said it was fine.

The recovery, was tedious, boring and restless!  One must sleep facing down ( two weeks for me ) my mom and I’ve tried everything until we came up with a solution.  Bought a massage table with the open headrest from Costco and placed a huge mirror under me angled towards the TV so I could at least be entertained and now there’s iPads. The recovery is very important as one can lose their vision if not properly taken care. It is imperative after this surgery to always have a doctor’s visit at least once a year if not twice just to be safe.

Many, many thanks to Melissa Glover who gives us some hard-won advice on patching a very young toddler.  To follow her chronicle of “the patch”, check out her blog http://thegloverfamilyblog.blogspot.com/

I have a friend who runs marathons. She trains by completing 5, 10 or even 15 miles a day. While I have complete respect & admiration for her, I also know that my “training” blows hers out of the water.  See, I have to keep an eye patch on a toddler. For 10 hours a day. A toddler. An eye patch. 10 hours. Sure makes a 15 mile run seem like sitting on the couch. But, I am here to tell you while there is no t-shirt & medal at the finish line, what seems impossible is actually…possible!

Our condensed story: At 8 months old my son saw an optometrist through the infanstsee program, which provides free visits for 6-12 months olds (www.infantsee.org).  My aunt told me about it and since it was a free visit, we decided to go. Much to our shock (worry, anxiety, tears), he was diagnosed with a pediatric cataract! At 11 months, he started wearing an eye patch (2 hours a day). At 12 months his patch time was increased to 4 hours a day. At 13 months, we were at 6 hours. At 14 months he had cataract removal surgery & the patch time increased to 10 hours! With the addition of glasses at 15 months, it is safe to say the last 6 months have been a whirlwind. And by “whirlwind” I obviously mean “I am desperate for normal to return!”

Anderson after his surgery.

If your toddler is starting patching, be prepared. It’s hard.  I am saying this not to scare you but to make you realize you are not alone. While we have only been patching 6 months, we have definitely figured out some ways that make our lives much more routine. I will not say “easier” because no variation of the word, “easy” should ever be included in the same thought with “eye patch”.  Unless it is something like, “It is easy for me to hate the eye patch.”

When we first started patching, I was desperate for information. My son is my first baby & just when I started to get the hang of the whole mommy thing, BAM-an eye patch, glasses & surgery. What on earth? My frantic attempts at scouring the internet led me to discover that there is not a lot of info on toddlers and eye patches. Most of what I could find dealt with older kids & included words like reason, explain, bribe and charts. Since my son couldn’t even walk yet I knew I was dealing with a slightly different clientele. But, after much trial & error (and 6 months) we have made it routine, which is far from perfect but better than survival mode!

GETTING the patch on

Start with the right equipment:

• PATCHES: We tried Nexcare & Opticlude before my sister discovered krafty patches which quickly took over as our favorites. Because you are going to go through A LOT of them, it’s best to just order in bulk. What I love about these patches is they come in a variety of colors, they don’t irritate his skin as much as the others, they stay on pretty well & they can actually be reused if you can get it before your kid crumbles it up. Depending on the size of your kid’s face, you might have to trim the inside a bit.
• GLASSES: We use Miraflex glasses, which are 1 piece of malleable plastic. Perfect, perfect for a toddler. My son is fearless, active, a climber and into everything! I cannot imagine how many pairs of glasses or trips to the eye doctor we would have made by now if he didn’t have plastic frames. Numerous times a day (especially in the car), he will take them off and they don’t break at all because they are plastic!
• OTHER: Use Milk of Magnesia to create a barrier between the skin & the patch. We keep some in a travel size bottle because I made a mess every time I tried to dip the Qtip in the real bottle. Also, stock up on some kind of lens cleaner. Wal-Mart, Sams, etc. sells lens cleaner wipes for very cheap & we keep those stashed everywhere. Toddlers are sticky, dirty and touchy. The lenses will be so gross despite your best efforts. Anytime he takes them off, I clean them very quickly & then put them right back on. I try to keep them clean because he already is at a disadvantage with only having access to one eye!

The key to patch success is getting on the patch on while he is still disoriented in the morning. Don’t turn on any lights, TV, etc. until it is on. Give him his bottle/sippy cup & put a little milk of magnesia around the eye, let it dry for a few seconds & put the patch on! It has to be on before he is awake so he is used to it. Also, because young toddlers don’t understand, “close your eyes” yet, if his eye is open you will hear eyelashes all day as he blinks.

KEEPING the patch on

• So, once it’s on you only have 9 hours and 59 minutes to keep it on! This sounds like a nightmare & it will be at first. The key to keeping it on is thinking one step past normal toddler. All toddlers are active, independent & stubborn. As it is, you have to choose your battles so an eye patch definitely increases the intensity. Remind yourself that this is not a battle you can choose. You have to fight it. There is no option. So, you have to figure out how to make it happen! The key is A LOT of distraction. Whatever they are interested in, have it ready. Sing songs, look for trucks, read books….There is NO time away from your kid for awhile. The first few months my son was either holding my hand or sitting in my lap. He loves the vacuum so we just vacuumed a couple of times a day. You have to keep them distracted to they don’t remember it’s there! It will not be easy. Deal with it. Sounds harsh, but once you give in it will be easy to give in next time.

Anderson wearing his first patch!

• When it is time for it to come off (naptime, bath time), try to teach him that only Mommy or Daddy can remove it. He will still try to remove it, but it does help.  Always take it off from the inside to the outside because the outside skin is less sensitive.
• Don’t call it “patch”! It will consume your conversation with everyone you know and every time he hears that word, his little hand will shoot straight up to pull at it. We call our son’s patch the “cougar”. I have no idea why but it works. Once he figures that one out, we will switch to a new word.

I read a suggestion to keep water wings on him to prevent his arms from being able to reach his eye. They didn’t really work for us but he looked pretty cute!

STAYING sane

• This will almost push you over the edge. In the beginning, we tried filling in the patching chart to keep up with the hours but it quickly turned into a chronicle of how many times I cried that day, and I knew that was not a reliable outlet.
• Get frustrated. Get over it.  It’s unfair for your baby & for you. But, what is beyond fair, lucky even, is that you found out about the situation and are fixing it! He will react how you do, so don’t freak out when he takes it off. Take it from him and put it back on. Repeat. Repeat. Keep doing this until you win. The victory might only last 5 minutes until he removes it again, so start over. Your child’s vision is in your hands & you don’t want to explain to him one day that he can’t see because you let a 1 year old call the shots.
• Embrace it. Some people don’t make their child wear the patch in public because it is uncomfortable & prompts stares. This is where it is actually easier the younger they are because their feelings won’t get hurt. My husband has taught me that humor can cure anything. He once chronicled a detailed narrative involving an out of control parrot when asked about the patch.

• Remember, there is not much that is more challenging than keeping an eye patch on a toddler. But, you CAN do it! And, one day it will all be worth it when your kid looks at you with BOTH eyes to tell you he loves you!

Zoe went in for her  first appointment since she started patching.  She’s been patching 4 hours every day for 7 weeks.  She’s certainly told me multiple times that she doesn’t want to wear a patch, but to her credit, she’s worn the patch every single day without fail.  I was hoping we’d see some progress at the appointment, but I’d be lying if I didn’t say I was worried.

This time she read the charts with no hesitation, with both eyes.  Just 7 weeks ago, I’d watched her struggle to identify the shapes when she had her left eye covered, but there was no struggle this time.  Even better was later when her ophthalmologist put the polarized glasses on her and showed her that picture of the fly where the wings look like they come out of the picture.

“Can you see the fly’s wings?” asks the ophthalmologist.

“Yes!” says Zoe.

“Can you pinch them?”

She reaches above the picture with her hand.  “No, actually I can’t,” she says, clearly puzzled by the whole thing.  I almost cried.  And we try to explain what’s going on, and why it’s a good thing in words that a 4 year old would understand.   Then the ophthalmologist asked Zoe to look at the animal pictures on the other side of the test.  All of a sudden Zoe started excitedly talking about all the different parts of these different animals that were coming off of the page.  Crazy!

We’re going to try tapering off Zoe’s patching:  2 hours per day for the next 2 weeks, then 1 hour per day for another 2 weeks, and then a follow up exam 2 weeks after that.

I’d love to say that there was something that we did these last 7 weeks that was the key – that there was some quick tip or trick I could pass along that would cure every child’s amblyopia.  But I want to be clear: we were extremely lucky.  Yes, Zoe did a lot of work with the patching, and I’m so very proud of my girl for doing it, day after day, at school, at church, even at birthday parties, and even though she often told me she didn’t like it.  But I’ll reiterate, we were lucky. Zoe’s amblyopia was mild to begin with, I didn’t catch what her acuity was in her weaker right eye when we started patching, but it wasn’t awful.  Good enough that she could pass a vision screening at her pediatrician’s visit without triggering a referral in any case, which means better than 20/40.  But since she’s been seeing the same eye doctor for over 3 years, her doctor saw her right eye’s acuity had dropped since her last visit 6 months ago, and had us start the patching right away.  So it was mild, and caught early.  And the fact that her bad eye wasn’t that bad meant that while patching was not fun, she could still function relatively well with her good eye patched, which no doubt helped with compliance.

Elliana and I were asked if we would review the book Hoppity Frog Has Two Clever Eyes, by Hazel Kay, illustrations by Joseph Kay, a product of www.kayfunpatch.com.  It is a cute little rhyming book geared for pre-school and kindergarten age children that tells the story of when a little frog named Hoppity gets glasses and begins patching.  Hoppity can’t win at playing catch the flies and when a lady comes to check everyone’s eyes,  Hoppity can’t see them and his parents take him to  the optician, orthopist and ophthalmologist.   He is told he has amblyopia and will need glasses and a patch.  In the end, his amblyopia goes away and he is not wearing glasses anymore.

The illustrations are simple and cute.  Elliana was excited to see that the pages were in black and white for her to color and immediately began coloring it as a gift  ”for a friend who wears glasses.”  I thought the concept of a coloring book / learning book was great and I wish there were more of these available for parents. (Elly’s coloring of a page below)

Although I love this concept, I did however change the wording as I read it to her.  This book actually hit me hard and made tears come to my eyes.  (I read all books myself before reading them with my children) It is supposed to be a cute story about getting glasses, but in all 17 pages,  Hoppity only wears glasses on 3 pages.  In the end, he has clever eyes, and NO glasses.  My baby will always have glasses and I consider her to be one of the most clever children I know.  Also, it is my personal opinion not to use the word lazy.  In no way shape or form would I ever use that to describe my child and I have chosen not to use the term “lazy eye”  with her.  We use strabismus and amblyopia.  She has worked to hard with patching 6-12 hours a day for almost 2 years and has gone through 2 surgeries and their recoveries to be considered lazy.  I do so wish they would not have ended it with his glasses laying on the ground and his Amblyopia gone.  My daughter will always need glasses no matter how good she is at patching. Due to the author’s choice of ending, I have removed the last few pages of the book and ended it at “Hoppity thinks his glasses are cool.  He is excited to show all of his friends at school.”  We can now enjoy the book and I feel better knowing that it goes along with the message I want to send to my kids about glasses and patching.

 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.