little four eyes

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.

I’d been planning on doing a post on babies and young kids in contacts, since kids in contacts have been in the news recently.  Then earlier this week, this comment came in from Emam:

I came across this website when searching for tips on how to put on contact lenses for babies. My son Adyaan is 2 months old and he will have his cataracts removed on Saturday on 27 November 2010. He has been diagnosed with congenital cataracts due to rubella syndrome. After his eye surgery he would be on contact lenses of the highest power. As his parents we are indeed very scared of fixing his contact lenses for daily use. We are assuming we have to put eye drops in his eyes every day. We are scared of thinking that he will scream and cry and try to rip it off when you will not have any option but to be cruel with him and fix his contact lenses.

We don’t know how he would coup up with the contact lenses. His doctor prefers if possible Adyaan should be on contact lenses, either daily wear or extended wear, through out his life. Has anyone been through the same thing with contact lenses and found a better solution?

Any feedback or experience would be highly appreciated!

So for all you parents with babies or kids in contacts, care to leave any tips or advice?  I’d also love to hear what led you to get contacts for your kid, how easy or hard it was for your child to adjust, and how things are going now.

Thanks!

This comment came in from Karen.  I wanted to put it up as a regular post so that everyone can see it because it’s such a helpful and interesting story.  Karen got glasses at 19 months, and writes about growing up with high myopia and glasses.  – Ann Z

I am writing just to reassure some of you. I was diagnosed as a high myope at 19 months. My mother reported that she had questions about my vision at about 9 months old because I would run my nose along her blouse to see the flowers. She said she thought it was strange that I would cry when any furniture was moved. I would run my nose on the back of the “little golden books” to “find the doggie.” She actually used this as an example to show the pediatrician when he kept telling her all babies hold things close. When he saw this he changed his mind and sent us to a pediatric opthamologist.

I have had a stable -10 in both eyes since I was a baby. I was prescribed a little blue pair of glasses. I did not take them off when I was first fitted.   My mother said I wore them all day from the beginning. The only concerns I, personally, had as a child were a fear of having a fire or tornado where I would lose my glasses (I felt helpless without them), wishing terribly that I could wear the cool sunglasses made for kids, and how to combat the incessant teasing at school because of the strong prescription.

I went into gas permeable contacts at age 11 and loved them from the beginning. I can see so much better than with glasses. When I first got contact lenses I thought our fish in our fish tank had grown because contact lenses do not make things look smaller like high prescription lenses do. I lost contact lenses a lot. I lost them playing outside, riding bikes, swimming, and skateboarding, but my parents, thankfully, kept replacing them. (A vision budget is a must). Contacts have been the best! If I could have had them earlier I would have, in a second. I have even had a couple of eye injuries from my contact lenses when I was hit with a tennis ball and when I got kicked while jumping on the bed. The accidents caused the contact to cut my eyeball, which did not cause anything more than a small cut. It healed fine, and I still wouldn’t trade wearing contacts for glasses. I have glasses, but only for when my eyes are resting from contacts.  I have looked into Lasik which doesn’t look like an option right now. I have read that vision through gas permeable lenses is better than Lasik.

Keep in mind that even with a high myopia diagnosis kids can have a great time and will manage with the sight they have. And remember to buy them a pair of cool sunglasses!!

I’m posting this update on Mia from Danielle.   -Ann Z

Mia finally received her contact lens with a prescription of +8.  We had to try 3 different contact lenses and all 3 were sliding around inside her eye.  Due to Mia’s glaucoma her eye is not shaped normal and is what the doctor called “steep” so her optometrist had to order a custom fit contact that will stay in place. Mia will have to wear a contact that slides until her new lens comes in. It was crazy how good Mia was through all of this, I had to insert and remove 3 different lens and she didn’t cry.  The last lens we tried was slightly thicker and more rigid and must have been uncomfortable sliding around, however she only tried to rub her eye a few times.  I think she was much too busy trying to get off my lap so she could go through the cabinets in the doctors office.   It amazes me how comfortable she is at all of her eye appointments, she screams the entire time we are with her pediatrician, however her PO is a different story.   We find out in 3 weeks what we will be doing with her glaucoma valve and scarring on her cornea.   I will keep everyone updated.

Back to the contact lens, I have this routine I follow every morning, mind you I work evenings and I don’t get home until after 12am and I have to submit a daily report, so I don’t get to bed until 2 or 3am.  Needless to say, I am up with the kids at around 8am, 9 if I am extremely lucky.  So inserting a contact lens on only a few hour so of sleep can be difficult.  I need to have caffeine before I even attempt.  Once I get the contact lens in, Mia is fine, she seems very comfortable wearing a contact lens. We have an in ground pool so when I take the kids in, I have to take Mia’s contacts out before going into the pool, and back in when she gets out.

Mia in the pool with her "Popeye squint"

Mia’s aphakic eye is extremely light sensitive, she has this squint that we call the ”Popeye squint”,  she is so light sensitive that she either squints or covers her eye when she is outside.  I just wish she could go outside and enjoy a sunny day like her brother.  Sorry, back to the contact,  this evening while I was at work my husband called me in a panic, Mia was crying and screaming for almost an hour.  My husband thought her contact lens folded or slid up under her upper lid and he could not find it.  I had to rush home from work and when I got home Mia was clamping her eye shut and she did not want me near her eye.  We had to hold her down while she was screaming so I could get the lens out.   This was the 4th day we used this lens and we have not had any problems until this evening.  I can’t imagine how she will react when I try to insert her lens tomorrow morning, it must be so irritating having a lens sliding around inside your eye.  I just wish they sized her eye during her last appointment. We had to wait so long for her contact lens and now it doesn’t fit right and slides around.  My poor little angel has endured so much.  I just wish I could take it all away.  Sorry, I’m just venting, it so hard watching her go through this.

On another note, Mia had her 1st birthday about 3 weeks ago (I can’t believe she is 1 already), I got the kids these silly glasses with different flowers and animals glued along the frame.  My mother had to hold Mia’s arms so we could take a picture of her with these glasses on.    She is still very stubborn about wearing glasses, even when they are pretend glasses.

This second question came from Barb K in a comment.  -Ann Z

We have a lovely 4 years old daughter  who – unfortunately like her parents –  is extremely farsighted. Her eyeglasses are +20.00 and even when she wears them she has very poor vision. I s there a chance, however, that she can  grow out of her farsightedness, or must we prepare for her to be visionally impaired for the rest of her life?  What experiences do you people here have with contact lenses/implants?

Danielle posted this comment recently, and I wanted to post it on the blog for anyone else dealing with glaucoma or cataracts.  -Ann Z

I just wanted to give everyone an updated on Mia, she went in for an EUA (exam under anesthesia) on Thursday.  Her PO told us that her glaucoma valve shifted even further and is pressing against her cornea which has caused scarring.  The scarring is not obstructing her vision so we have a few options that we will be discussing with her glaucoma specialist from Mass Eye & Ear.  She might need to have corneal replacement surgery, at which point she will receive a donor cornea from a cadaver.  I have read that many babies reject the donor tissue and I do not want Mia on anti-rejection medication at such a young age.  I have read articles about a relatively new procedure were they use an artificial cornea called Keratoprosthesis, I also read that there is a very low rejection rate.  I will be speaking to her glaucoma specialist about this new procedure, I am hoping that this is an option, Boston Children’s and Mass Eye & Ear are very advanced in technology so I hope this will be a possibility.  Another option is we can remove the valve and hope her high intraocular pressure (glaucoma) does not return.  Or we could do nothing and see if the valve shifts further causing the scar tissue to obstruct her vision. Either way she will end up needing another surgery.   She was also sized for a regular contact lens that we will hopefully receive within the next 2 weeks.  Other than the shifted valve and news of another surgery, she is doing extremely well and her procedure under anesthesia went really great, she was starved when she woke up.

Zoe and I re-watched the Yo Gabba Gabba episode “Differences” that I’d written about before.  Previously, I wrote that I was disappointed that Muno got glasses that episode (which has some great songs about wearing glasses), but then he never shows up in glasses again.  Turns out I hadn’t watched the full episode.  At the end, he complains that his glasses always slip, so they give him contacts.  Just like that.  Which isn’t really any better, but at least there was  an explanation.  Still, I wish he’d stayed in glasses, for the whole episode, Zoe kept saying “glasses, like Zoe!”

Then I came across this article “Kids with contacts like their looks better than kids in glasses.”  It’s the result of research done at Ohio State University by Jeffrey Walline.  (If the name sounds familiar, then you have a great memory – he’s the researcher that published a study showing that kids do not think other kids in glasses are less attractive).  Basically, this study looked at nearly 500 nearsighted children between the ages of 8 and 11.  Half were assigned to wear glasses, and half contact lenses.  The kids were asked about their feelings of self worth at the beginning and end of the study.  While there was no difference between the groups in terms of global self worth or their value to society, children wearing contact lenses felt better about how they look, their athletic abilities and acceptance by their friends than did children wearing eyeglasses in a recent study.  The article goes on to make the recommendation that “kids, in consultation with parents, should be able to choose what kind of vision correction they want,” obviously, with maturity and hygeine being big factors in that decsion.

Gah!  It just hurts to read that.  I don’t have strong feelings one way or another about contacts.  I had them from age 13 to 18, and then stopped because my eyes were always bloodshot, and the contacts would cloud up after about 10 hours of wear.  But it just hurts to read that the kids in glasses felt like they were less attractive and that their friends were less accepting of them.  Gah.  Childhood relationships can be crazy enough, without this added factor, and I know I can’t protect Zoe from everything, but I hate the idea that the things that help her see – and that look so freakin cute on her – might make her feel less accepted.

I don’t know if we’ll offer the choice of contacts as early as they did in the study, obviously that depends on what she’s like as an 8 year old.  I know that I’ll do my damnedest to make sure she never feels unattractive because of her glasses.

What are your thoughts on kids in contacts as young as 8?  Will you offer them to your child (again, assuming your child is mature enough to care for them)?

This post comes from Danielle, who’s daughter, Mia, had a cataract in one eye.   If you’re new, you may also want to read Mia’s story and update. – Ann Z

Our daughter Mia just received an occluding contact lens that she will use as a means for patching her left eye. She began wearing a patch when she was 2 months old and once she turned 3 months old we began having problems with her screaming and rubbing the patch until she was able to remove it. We have tried stronger adhesive patches that caused a rash on her face and was starting to remove her eyebrow. Her PO suggested makeshift arm splints and we flat out refused to restrain our daughter. After we exhausted most of our options, and with consistent nagging and persistence, we finally got her the black occluding contact lens.

Mia wearing the occluding lens

The lens is just like a regular contact lens and needs to same care. When the contact lens is in her eye it completes occludes her good eye and works exactly like a regular patch. Our daughter was born with a unilateral cataract so when she patches her good eye it must be completely occluded; we could not use atropine drops as a method for patching. Mia received her lens yesterday and we began using the lens this evening. We were able to get over 2 hours of straight patching in; which is the longest she has had her eye consistently patched since she was about 3 months old. Mia is really good with people fiddling in her eye so she was pretty good for us when we put the lens in, however it took 5 tries before we got the lens in her eye. She also has brown eyes so the lens is not very noticeable.

If there are any parents that are having as much problems as we have had, please ask your doctor about the black lens. I have read up on the occluding lens and I have heard that the success rate is much higher than a regular patch.

close up of the lens on Mia's eye