little four eyes

As we come to the end of January, which this year is Glaucoma Awareness Month, I wanted to post a few resources for families who are dealing with pediatric glaucoma.

Glaucoma is a leading cause of blindness, and while older people are more at risk, glaucoma can occur at any age.  Pediatric or Childhood Glaucoma may be congenital (1 in 10,000 babies in the US are born with glaucoma) or may develop later in childhood.  Glaucoma is also closely associated with cataracts, children who have cataract surgery are at higher risk of developing glaucoma, and so are often closely monitored.  Some symptoms of childhood glaucoma include light sensitivity (photophobia), corneal opacification (hazy gray cornea), enlarged eye and cornea, epiphora (overflow of tears), and vision loss. (Information is from the Pediatric Glaucoma and Cataract Family Association, and the Glaucoma Research Foundation).

You can find more information about pediatric glaucoma and support support for those dealing with it here:

• Congenital Glaucoma Network - this is a social network for all people affected by childhood glaucoma come to share their story.  There is a forum, blogs, a place to share photos, videos, and links to more resources.
• Pediatric Glaucoma – information on pediatric glaucoma from the Pediatric Cataracts & Glaucoma Family Association.  You may also want to check their Knowledgebase for more articles on glaucoma.
• Children’s Glaucoma Foundation – a non-profit dedicated to supporting children with glaucoma.
• Childhood Glaucoma – symptoms, treatment options, and stories about childhood glaucoma.  From the Glaucoma Research Foundation.

You can also read other posts on Little Four Eyes that deal with glaucoma.

If I’m missing anything, please let me know!

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’ve recently learned about, and subsequently added some new links on the resources for parents page, and wanted to bring them to your attention.  Thanks to everyone that has suggested sites, and please, keep them coming!  If there’s a helpful website or great community out there, I want to list it.

Reference resource

• Eye Resources on the Internet – this is an extremely thorough list of Internet resources about vision compiled by the Association of Vision Science Librarians. (Thanks to Dr. Maino for posting this)

Communities for specific vision issues

• Congenital Glaucoma Network - a network for all people affected by childhood glaucoma come to share their story.  (Thanks to commenter Amy for pointing me to this network).
• Magic Foundation: Septo Optic Dysplasia (SOD)/Optic Nerve Hypoplasia – information and links to other families with children with Septo Optic Dysplasia.  (Thanks to commenter Denise for pointing me to the Magic Foundation).

Blogs by eye care professionals

• Dr Lea & Children’s Visions – Dr. Lea Hyvärinen is a Finnish pediatric ophthalmologist.  She may be most well-known by people here as the developer of the LEA symbols (the pictures of a house, an apple, a circle and a square that are commonly used as an eye chart for children).  Her blog managed by her daughter, and is so far, a way of making available her writings about children’s vision development.
• The VisionHelp Blog – VisionHelp is a blog written by a group of leading optometric vision specialists in the U.S.  They seek to increase awareness and understanding of vision treatment and vision therapy.

This update comes from Danielle, whose daughter Mia had cataract surgery as an infant, and continues to deal with glaucoma, patching, and contacts.  You can read more of Danielle’s posts about Mia here (introducing Mia, after her second glaucoma surgery, occluding lens for patching, glaucoma valve shifting and corneal scarring, Mia’s contact lens).  -Ann Z

Mia at 20 months

I have been avoiding little four eyes because we have been having a tough time with contacts and patching.  As Mia gets older, the stronger she gets, not only with physical strength, but with mental strength and stubbornness. She is my little firecracker and she does not like having her vision taken away. She has become crafty with her contact lenses and has learned how to remove them, or a new trick where she puts her finger on her occlusion lens and slides it to the corner of her eye. It must be very uncomfortable, however she chooses to be uncomfortable in order to see.  Mia’s vision without correction is 20/1300 so she is legally blind in her right eye; and with correction she is 20/360. I compare her vision with someone that is blind, so when she is patched I am literally stealing her vision and expecting her to function and move around like she can see; which she can’t. I understand that patching will increase her vision, however the time it will take to regain vision in her right eye is torture to her.

Mia after her glaucoma surgery

During an exam under anesthesia 2 months ago, we found out that Mia’s glaucoma returned. She had valve surgery 3 weeks ago and everything went really well.  As usual she was starved when she woke up and wanted her juice and crackers, and to get the hell out of the hospital; saying “bye bye” every few seconds. Since Mia is so strong willed about having anything on her face, we purchased soft splints for her arms to prevent her from removing her eye shield and bandages. She hates the splints and learned very quickly to keep her hands away from her eye or they will go back on.  It broke my heart that she does not even realize that her right eye is covered; which means she is pretty much blind in this eye. She is walking around like normal, not even skipping a beat. It kills me, it makes me feel like I have not done everything in my power to prevent her right eye from going blind. I am sitting here crying as I type thinking, how and why. This has been such a hard and devastating road that we have traveled. But I hope and pray that it is not to late to save her vision. Sometimes I think about the choices we have made; what if we decided to do nothing when we were informed about her cataract when she was 12 days old. Yes, she would have gone blind in her eye, however she would not have to endure surgery after surgery, or nystagmus, amblyopia, exotropia, glaucoma, patching, glasses, contact lenses, eyes drops, ointments. My father always says “you make the best decision based on the information you are provided with, that is all you can do”. But this does not make me feel like the decisions we have made were the right decisions, or even the best decisions. Mia is only 20 months old and she has had to endure more than most people during her short 20 months of life. I just wish I could take it all away, that I could be the one going through all of this rather than her. I am sorry that this post is so pessimistic, I am just having a difficult time and I need to get this off my chest and this is the best place for me to vent, you all know the pain I am feeling.

We are planning to use her arm splints to help with patch time. I just hope that we have not lost all that we have worked so hard to save.

To all the parents that are faced with surgery, it is hard, the hardest situation you will ever be placed in, and going in the operating room to assist with putting your child under is the hardest part. I have done this 4 times and it does not get any easier.

I have attached a few pictures of Mia. I hope everyone is doing great, and you all had a wonderful Christmas and/or holiday season.

I just read a fantastic post over at Christopher’s Eyes that I wanted to pass along. Christopher is three, and has congenital glaucoma, which means many, many appointments to check his eye pressure.  For young kids, this means an exam under anesthesia (EUA), which is a huge production requiring a trip to a hospital and a lot of preparation, because the child will be put under anesthesia.  Most doctors will say that EUA’s are needed until a child is at least 6 because no child will sit still enough for the adult pressure checks.  Christopher’s Dad talks in great detail about  the process they went through to help Christopher feel comfortable at the doctor’s office, and to understand what was going on, and to sit still for successful eye pressure checks at the doctor.

Even if your child won’t need an EUA, the post is a good one for thinking about compassionate and helpful ways to help your child feel comfortable in exams or with unfamiliar procedures.

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.

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.

Wow. I finally have something “important” enough to blog about. Thanks Ann for the opportunity! I don’t think I can express just how much I truly appreciate it.

First, an introduction. My name is Stacie. I’m a married working mother of 3 beautiful children. Aaron is 14 and has Aspergers (high-functioning autism), Jamie (my girl) is 13 and was recently diagnosed with bi-polar disorder, and Conner, my 3 year old, was recently diagnosed with “late-onset” primary congenital glaucoma in his right eye. It’s Conner’s challenge in life that brings me to this blog.

If you are anything like me, you have googled and googled and googled until you can’t google no more, trying to find someone who is going through something at least half way similar to what you are. Raising a child with Congenital Glaucoma.

Guh. Just the sound of it. I’ve noticed that medical professionals say “Congenital Glaucoma” in the same tone of voice as they say “Cancer.” I know it’s not cancer. It’s not life-threatening, but it’s very scary all the same.

What is Congenital Glaucoma? How often does it happen? What causes it? Is it genetic? Can it be cured? How many surgeries will he/she have to go through? Will there always be eye drops? Will my baby go blind? All questions I asked myself the first time I sat down at my computer to find out all I could find about Congenital Glaucoma. It’s my hope I can share some of the things I’ve found, some of the experiences I’ve had, and some of the knowledge I’ve gained, plus help parents of kids with Congenital Glaucoma network and provide each other with support.

Anyway, I’m getting ahead of myself. I’d like to start off telling Conner’s story so far in little segments. I believe there are huge lessons in the little segments that may help some parents with early diagnosis, and early diagnosis is the key to less vision loss.

Read more…

Stacie commented on Mia’s update and included a question that I wanted to put on up on the blog to reach others.

My 3 year old has just been diagnosed with congenital glaucoma. . . Are there any congenital glaucoma online parent support groups?   I can’t seem to find one, and am toying with the idea of starting my own.

If you know of any such group, or if you’d be interested in joining one if one got started, you can email Stacie at connersmom @ petersengraphics . com, or leave a comment and I’ll get it to Stacie.

From reader, Danielle:

I wanted to give an update on Mia and her progress; and to maybe vent to other parents going through similar situations.

Mia just had her 2nd surgery on Tuesday for glaucoma.  After her first surgery when she was 1 month old to have a cataract removed from her right eye, her IOP (intraocular pressure) was high.  She was taking several different glaucoma medications to help decrease her pressure, however her IOP remained high.  On Tuesday she went in for surgery to have an iridotomy (a small hole placed in the white part of her eye) and to also have a valve (similar to a shunt) placed in her eye to help control her pressure.  Her surgery last over 3 hours and there were no complications (thank god).   While she was in surgery she also had tissue that began growing over her artificial lens removed and her pupil was widened.   We currently have to place 5 different drops and ointments in her eye 15 times a day.  We had to create a chart to help us so we would know which drops /ointments we have placed in her eye throughout the day.  She is already scheduled to have an exam under anesthesia in 6 weeks to ensure the valve has opened and is draining excess fluid.  We have a long road ahead of us with many surgeries and exams under anesthesia to correct her vision.

Over the past 3 weeks she has not been able to patch or wear her glasses due to clouding from glaucoma and the re-growth of tissue over her lens, which was completely obstructing her vision.    I feel like every time we think we are making progress, we are set back by some other eye condition.   I also feel like we are unable to effectively improve her vision because we are unable to patch and have her wear her glasses.  We have already lost 3 weeks and I am unsure when she will be able to begin with patching/glasses due to her recovery from surgery.   I feel horrible that she has been through so much and she is not even 4 months old.  I believe everything she has been through; all of the surgeries, poking, prodding, different medications, many trips to the ophthalmologist, will make her a very strong willed little girl.  She is truly my hero.

Interesting fact –  The legendary singer, Ray Charles went blind at age 7 from congenital glaucoma.