little four eyes

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.

This question came in from Nicole, whose 6 month old, Penny, wears glasses because of congentital cataracts.

I need a little bit of help. The last few days or so, I cannot get Penny to keep her glasses on. I can distract her for a few minutes, but as soon as I turn away, she pulls them off. If she tries to pull them off and I stop her, she tries to rub her eyes through the lenses. I’m getting very frustrated, and leave them off as a result. And I do see her weaker eye wandering because of leaving her glasses off.

With a very active 6-month-old, I just don’t know what to do. I’m going to call her PO tomorrow and see if they can squeak her in for a prescription check to see if it hasn’t shifted majorly again.

Anyone here had a young one who wore glasses just fine, only to all of a sudden start refusing to wear them?  Any advice for Nicole?

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.

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

I ran across this post this weekend:

The frustrated princess, the gracious mother and the good eye doctor

and I had to share it with everyone.  The post is written from the perspective of someone who had glasses at a very young age, she talks about having cataract surgery at age three, and having to patch and wear glasses.  As a young child, she found it so terribly frustrating, and often took her frustration out on her glasses.  The part that got me was her gratitude at learning just how much of a difference it made to her vision that through all of it, her mother insisted that she wear the patch and glasses.  As she wrote: “Thank you for watching me suffer and never letting me see how much it hurt you, too.  Thank you for trying so hard to make it fun – with the doggie cloth eye patch, with the fun stickers, with the colorful glasses cords — even though it still wasn’t fun.  It really did make a difference.”

Her mom made her a special eye patch for her princess costume one Halloween (the picture is on her blog, here).  Did anyone incorporate patches or glasses into their kid’s costume this year (or in prior years)?  Back when Zoe first got her glasses, I thought she’d make a great Harry Potter as a young child, since her hair always stood up in crazy directions, but it had grown out by the time October rolled around this year.

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.

I’ve moved this post from the comments, because I wanted to have it on the front page for everyone to read.  I really love reading everyone’s stories about their kids and their glasses – I feel like I’ve learned so much from them, and I hope others do too.  Please keep them coming (as always ann @ shinypebble . com, or leave a comment) – you can either just have me post the story, or I can set you up as an author so you can write more blog posts whenever you’d like. – Ann Z

. . .

Mia, nearly 3 months old

Hello, my name is Danielle and I am a mother of 2, Alex 17 months and Mia 3 months old. I thought I would also share my story and maybe this will help other parents that might have questions about cataracts.
I am also new to this complex world of eye problems. My daughter was born 3 months ago, and during her routine 2 week check up the doctor noticed that she did not have a red reflex in her right eye. He told me that this could either be a cataract, or she could be blind in her right eye.

I was completely caught off guard and felt like my heart stopped beating, my husband was home with our 17 month old son so I was alone when I received this information. I remember the look in the doctors eyes when he gave me the news. I stood there crying, holding my daughter, looking into her eyes, thinking why, and how, I thought cataracts only happened when you were old, how could this be happening to my beautiful newborn daughter. Her pediatrician sat on the phone for over 30 minutes trying to get us an appointment with an ophthalmologist. After multiple attempts, he was able to get us in to see a specialist at Boston Children’s hospital. When we saw the ophthalmologist she confirmed that Mia had a unilateral congenital cataract in her right eye.

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