Sunday, January 31, 2010

Overcoming vision challenges

Let her be proof.

Proof that children with vision issues can do anything with the proper tools, assistance and most of all when they are given the chance.

My daughter is now ice skating and she played (and scored) in an ice hockey game.

Yes, the same little girl who has been known to run into walls, trip or falls almost on a weekly basis. The same little girl who a year ago we learned was not using her left eye at all due to Amblyopia and her brain "shutting off" the use of her eye. All the hours spent wearing an eye patch.. the huge blow to her self esteem and confidence hit. The frustration and difficulties she faces on a daily basis.

.. Yet she continues to prove just how much of a fighter she is. To say she is determined is an understatement. Weeks of going to the freezing cold ice rink and packing on layers of padding and gear that are just as big as she is... Countless falls, followed by getting right back up again. Despite being the littlest child on the team and the only girl. She is unstoppable. Skating has given her confidence back. It has boosted her self esteem beyond ways that words can describe. The smile on her face says it all.

She did it!

On January 31st 2010 the Brick Stars special needs hockey team played their first game. The game was against the Jersey Dare Devils -another very special team. The game was in a word magical. No one kept score. Everybody got a chance to play. Everybody Skated. We all went away from it winners. Way to go Brick Stars!!!

My little star after she scored getting lifted up by Coach Alex DePalma.
Visit Everybody Skates to learn more about the 54 in 54 initiative and petition for ice rinks in NJ to set aside an hour of ice time each week for differently-abled skaters.


Stories of Children Overcoming Amblyopia, No Depth Perception and Eye Teaming Problems

Thursday, January 21, 2010

Alana's Story & a Call for Help!

I received this email from Alana's mother. Please read Alana's amblyopia story and chime in if you can help in any way. She has not made improvement with patching and is seeking information on alternatives.

Thank you in advance!



Our 5 year old Alana was diagnosed with Amblyopia back in July 09. Pretty bad on the scale of being -13.50 in the left eye, VA is 20/150 with her glasses. Per Dr's orders we started with 4 hrs of patching, that was moved up to 6 hrs on the 3rd visit. Her last appt in December did not have any progress report or positive feedback. The Dr even brought up the idea of maybe seeking another opinion.

We just got a second opinion by another Pediatric Opto on Tuesday who confirmed the same refraction of -13.50 and advised that we go to full time patching with a brief hour break during the day. Even though it has been a struggle some days she has been such a trooper through all this and her patching. Especially with the support of the family and her big brother she has been a princess!

The Dr has brought up the idea of a new procedure of implanting an interocular lens called Verisyse. I have attached the Clinical trial brochure with the tests of 5 kids aged from 5-11 years of age. [The file can be found here]

The procedure is only intended for cases of -8 or higher. Has anyone heard of this alternative? We will be meeting with the Dr's at the Jewels Stein Eye Institute at UCLA CA next month. Hopefully they can give us some hope/answers to try to improve her vision since there has been no progress in 6 months with the patching. Don't get us wrong, patching is still a great treatment and the #1 treatment for Amblyopia but we're looking for alternatives since the patching has not helped..

Noah's Story

Meet Noah! I received this comment on my "call for stories" post and wanted to share Noah's story! Thank you Hannie, for sharing your son's journey with us. I am sure many of us can relate to what you went through during those initial eye doctor and pediatrician visits. I am so glad to read that Noah's Amblyopia is improving!


Hi!I'm the mother of Noah, a 5 year old with Amblyopia. I have been following the blog and facebook since the the first day we found out, about 4 months ago.I have to say, reading that I wasn’t the only one that very first night was so important for me. And for that i have to say to all, THANK YOU!

Our story goes kinda like this...

We moved to LA, from Costa Rica about 2 years ago. We had been noticing for a while that Noah's right eye would turn inwards but only when he was really tired. So I mentioned it to his pediatrician, and he said it was nothing, he even said that his eye test was 20/20 and not to worry.

But my husband kept on insisting, even saying that in pictures with flash, he noticed something different in the reflection in that eye. So next time we went to the pediatrician and they did the eye test it was so obvious that he could not see anything when they covered his good eye. My heart was pumping so bad and I felt like crying. The nurse said that, at his age, they don't concentrate. But I knew. So when we went in to see the dr. I told her I was very concerned. She checked with the light thingy, and said it is nothing, "he's 20/20”. I asked for a referral anyway.

The Dr. they sent me to, did not have an available appointment for almost 2 months. So we waited. When we finally went, it was terrible. The technician was awful. She asked me all these questions and if Noah tried to talk to her, she would ignore him. She tested him and again my heart stopped. My Baby couldn’t see a thing! How could I not have noticed? She told me she had to dilate, “hold him tight” She put in a drop, Noah moved, and she yelled at him! “Stay still. Now I have to do it again!” When we finally saw the Dr. he just told me facts, he has this, he has that, he needs glasses and he has to where a patch 24/7 if not he’ll be blind in that eye. When I started to ask questions he gave me photocopies and said read this, it’s all in there. See you in 2 month.

I’ve never felt so bad, and I had to put a brave face for Noah. That night we were up all night investigating on line. He really didn’t have any of the symptoms at all. I wrote to a cousin of mine that is an ophthalmologist and he confirmed everything. The next day Noah went to school with his patch and completely dilated since she had put 2 drops in. I called the Dr. to ask questions like what his sight was. Since there is no history at all in my family, I hadn’t even considered to ask. But the Dr. went on vacation for 3 weeks.

We went for glasses that afternoon at LensCrafters because it was the only place that would do it fast, and I could not imagine what it was like for him to be with the patch and not seeing anything. It was funny, wearing the patch was ok for him, but he didn’t want glasses. But as soon as he got them on, this huge smile popped on his face! “Everything looks real! And big!!!” he said. I didn’t know what to feel. I couldn't believe he could see through those glasses, I can’t see a thing with them!

Anyway I’m going on too much... We have a great new Dr. we love her! She said to start with only 4 hours of patch a day, because he has moderate Amblyopia, and to let the glasses do their job too. After 2 months he improved a little, and she was happy with the improvement. We, are more at ease.

And a great deal of feeling ok, is due to the blog, Thank you thank you!

Liv Fashion Doll wears glasses

My daughter has been asking for a Liv doll so since her birthday is coming up next month I ordered her one at random (for $10) and picked the blonde and blue eyed doll, Sophie. Imagine my surprise when the box arrived and Sophie has eyeglasses! She is going to FLIP when she opens this up.

I've said it before and I'll say it again. I LOVE that they are making fashion dolls for little girls and showing glasses in a positive light.... Showing that they can still be fashionable and "pretty" and wear glasses too! Good stuff for our little girls with glasses, for sure.




Also, anyone find it 'interesting' that the competing product Moxie Girls has a doll who wears glasses and her name is Sophina


Related Links:
Moxie Girlz wearing Glasses

Monday, January 18, 2010

Amblyopia & 3D


I've blogged a few times about 3D movies.

It seems like every time I turn around another kids movie is being released in 3D. This is cool for my son who really gets into 3D effects like the flying food in Cloudy with a Chance of Meatballs. Unfortunately for Belle, not so much. She doesn't see 3D like "the rest of us" and its just not worth paying the extra money for her to not see the movie as intended.

I wish I could see what she is seeing so I could know what she isn't seeing!

I was recently interviewed on the topic - you can read the article here

Missing out on 3-D magic

Just today I was reading an article about 3D coming to television and blu-ray players. Will you be buying one?


Related Links:
Avatar 3D Movie & Vision Issues
3D movies and Amblyopia
Amblyopia & Disney 3D Attractions
Fixing my Gaze Author - 3D Vision Workshop videos
Amblyopia, 3D Movies, and Ice Age 3
How to See in 3D and Advantages of Seeing in 3D…
Why Some People Can't See Avatar Movie in 3D?

Missing out on 3-D magic - 3D Amblyopia Avatar

Missing out on 3-D magic

http://www.theglobeandmail.com/news/technology/personal-tech/missing-out-on-3-d-magic/article1434859/

People with impaired binocular vision from crossed or lazy eyes can't appreciate the new standard in 3-D technology

By Dakshana Bascaramurty

From Monday's Globe and Mail

Four-year-old Isabelle Wurmser had high expectations for the next hour and a half of her life as she nestled into a large, upholstered seat at a multiplex theatre, her skinny legs dangling off the edge.

She'd strapped a large pair of theatre-issued 3-D glasses on top of her prescription pair and was all set to see Ice Age: Dawn of the Dinosaurs at a theatre in Jersey Shore, N.J. Her parents had shelled out an extra $3 so she could see the mammoths and sabre-toothed squirrel coming right at her.

But after the film finished, Isabelle felt ripped off. While the rest of the audience had marvelled over the 3-D effects, she hadn't seen a single one. Admittedly, the venture had been a crapshoot from the start: Isabelle is legally blind in one eye.

“She has very bad depth perception,” says her mother, MaryTara Wurmser. “She's always running into walls, tripping and falling.”

Ms. Wurmser was hesitant about taking Isabelle to the film, but the hype around RealD – the new standard in 3-D technology – gave her hope that her daughter might be able to see what the rest of the family did. In the end, all Isabelle saw was two dimensions.


In the recent weeks after the release of James Cameron's blockbuster Avatar in 3-D, others like Isabelle with impaired binocular vision have flooded online discussion boards, asking if those who have seen the film picked up on the added effects.

“I have a lazy eye ...I've noticed these RealD glasses are a lot different from 3D glasses of old...Which I come to think offers me some sense of hope in watching Avatar in 3D,” wrote one user at rottentomatoes.com.

“Can a person that suffers from amblyopia (also known as lazy eye) see a 3D movie?” inquired another on Yahoo! Answers.

When filmmakers began integrating RealD into their films a few years ago (the first with wide release was Chicken Little in 2005), developers boasted that it was a major improvement on the old standard. The most popular version at the time was anaglyph, in which two projectors are used to screen a film – one shows parts in red and the other in blue, and the viewer wears a pair of red-and-blue glasses to get the 3-D experience.

Anaglyph 3-D was criticized for causing headaches among viewers – even those with perfect vision. Keeping the two projectors perfectly aligned was virtually impossible, explains Rick Heineman, a spokesman for Los Angeles-based RealD.

The new technology uses one projector, and glasses with polarized lenses that cut blur and allow viewers to tilt their heads without losing image clarity.

But despite the improvements, Mr. Heineman says, the technology unfortunately can't reach a universal audience.

“There are still people [who] due to physiological differences aren't able to experience 3-D. ... That would be regardless of 3-D technology,” he says.

Those with impaired binocular vision (an estimated 3 per cent of the population) will likely see the film as 2-D from behind their fancy specs, says Duncan Anderson, an associate professor of ophthalmology at the University of British Columbia.

The two most common conditions that interrupt binocular vision are strabismus (crossed eyes or wandering eye) and amblyopia (lazy eye). Both are brain-based rather than eye-based, and develop during childhood.

Isabelle suffers from the latter. As her brain was developing, it chose to receive more visual input from one eye than the other, creating one dominant eye and one lazy one. She wears a patch over her dominant eye for a few hours a day to force the other to get stronger, but it's still weak.

There was a glimmer of hope for Ms. Wurmser when, during the preview for Cloudy with a Chance of Meatballs, Isabelle asked her: “Was that meatball flying at my head?” But as soon as Ice Age began, everything she saw was limited to two dimensions.

Ms. Wurmser took Isabelle to see Pixar's Up in 3-D a few months later, but halfway through the film the four-year-old took the special glasses off in frustration.

“After the movie she said, ‘Why was the movie so blurry?' ” Ms. Wurmser says. “You have to pay extra (for 3-D) and you don't even get to keep the glasses! I have a hard time justifying it when she can't see it.”

Dr. Anderson says that if one eye is only 20 per cent weaker than the other, those with amblyopia might be able to experience 3-D effects, but otherwise the chances are very slim. “I would tell them to go to the regular version. It will be certainly as good as or maybe better than the [3-D] one.”

Thursday, January 14, 2010

Seeking your Amblyopia Stories

Share your Amblyopia Adventures

Amblyopia Kids was started for me to chronicle my daughter's "journey" and adventures. But, she is just one of many many kids who are affected by Amblyopia.

This website is a place for anyone impacted by Amblyopia to share our stories and lend support. If you are a parent of a child with Amblyopia, an eye doctor, or perhaps an adult with Amblyopia yourself - and would like to share your story, please email me at amblyopiakids at gmail dot com or send me a message on Twitter to @amblyopiakids .

You can either join in this blog as a contributor or we can do an email interview and I can showcase your story in a featured blog post. I'm just so very happy to know that my daughter is not alone in this journey and that by getting out there and talking about it, we are making a difference.

Monday, January 11, 2010

Moxie Girlz wearing glasses!

My daughter really likes fashion dolls (like Barbie) and has gotten into the newest fashion dolls from MGA that have funky wigs - Moxie Girlz. She recently pointed out to me that there is a Moxie girl that "wears glasses just like yours, Mommy".


That would be Sophina.



The Moxie girls have a positive message about being true to yourself. I was pleased to see they made a playset with glasses.

Complains that her eyes hurt

She's complaining that her eyes hurt and that she can't open them. They aren't red, they aren't congested. She doesn't have a fever.

She was very sleepy all afternoon which I thought was due to the fact she woke up very early this morning and was asking for something to drink at about 5 in the morning. She took a nap on the sofa and woke up saying that her eyes hurt, crying. They aren't red and she doesn't have a fever so I am baffled. But because she keeps saying her eyes hurt, it worries me.

How to Choose an Eye patch for Amblyopia

Choosing an Eye Patch for Amblyopia

In the past, kids with amblyopia didn't have a lot of choice when it came to eye patches. Patches were cumbersome and either looked like big bandages that covered their eyes or like black pirate patches. This didn't make wearing an eye patch a very fun or pleasant thing for a child to have to do. If your child has amblyopia, it is important for them to patch on a daily and consistent basis in hopes of reversing the amblyopia and restoring vision to the weak eye (lazy eye).

Nowadays, there are many eye patches to choose from and styles so you can find what works best for your child. When picking an eye patch first you need to know if your child will be wearing eyeglasses with the patch or if they do not require glasses.

For a child who does not wear glasses
If your child does not require glasses you can use a "traditional" pirate style patch such as this Black Eye Patch (Pirate Style), a readily available style that you can find in most pharmacies for just a few dollars. You can also use adhesive patches that stick directly onto the eye. The Nexcare brand is commonly sold in your local pharmacies and are quite similar to a band-aid that covers the eye. A popular brand of adhesive patches for children available in many colors with a gentler adhesive is the Ortopad brand. If you are having trouble with patches not adhering well and need one with a strong adhesive then look into Fresnel Prism or MYI patches that also come in a variety of colors.

For a child who wears glasses
Children who wear glasses and need to patch can wear one of the adhesive patches under their glasses or get a patch that is specifically made to be worn with glasses. It is especially important when choosing the patch to be sure that the patch is 100% occlusive and does not allow a child to peek around the side, over the top or under the patch. I have tested several different brands of patches including Framehuggers, Patch Pals, Eye Mateys, Dr. Patch, and more. The patch that has worked best for my child, who has amblyopia, is the Framehuggers patch which is not obtrusive, comfortable, and certified peek proof. You can see a picture of my daughter wearing a framehuggers patch here and read our review of the Framehuggers patch. Out of the 20 or so different brands that my daughter tested out, this one is the one that we keep going back to day after day.

Find comprehensive eye patch reviews here
http://www.amblyopiakids.com/2008/07/eye-patch-reviews.html