Saturday, December 29, 2012

The gift of Vision

"I can pass this test with my eyes shut", said B, as she climbed up into the oversized exam chair.  

I watched my very confident little girl take to the chair like a pro and read off letters that were (mostly) correct.  This was going to be a good visit. I could feel it, I hoped it. I had every finger and toe crossed.

Despite getting a letter home the week before last from the school about a sub-par school vision screen, my daughter had been making steady progress at the eye doctor. We had been down to a minimal 2 hours worth of patching a day and at our last visit he had mentioned the possibility that she could be done patching very soon.  Like every visit, as we got in the car to head out she told me... "Maybe today I will be done patching".    Those words always put knots in my stomach because it has never been the case. At best, it has been a reduction in hours. But, more often that not - the drive home was long and abysmal with a sad little girl in tow.  As always, I hoped for her sake, and prayed that this visit would end of a high note.

And so there she was, sitting in the chair across from my daughter who had performed very well on all aspects of her vision exam. He said those words... those magic words..  The words my daughter has waited for for almost 4 years.

"How do you feel about stopping the eye patch?". 

Yes!  My daughter screamed and cheered.   She hopped out of the high exam chair and danced around the exam room.   It was the best news ever.

No patch for Belle!

She will go back for Re-check in 3 months.

Best belated Christmas gift ever, for my little girl!

We are so excited to be welcoming in 2013 without the eye patch. 



Monday, December 17, 2012

We're "back"....

So sorry I have been MIA.  Life has begun to resume more normalcy since our area was hard hit by Sandy back at the end of October.   Though our family and residence made it through with relative inconvenience (extended loss of power), our community was turned upside down so it has been a tough time for the kids and all of us.  School was out of session from before Halloween thru Mid November.

Belle has been continuing to patch just 2 hours a day and does it while at school in the morning.   She is scheduled to go back to the eye doctor over Winter Break, where she hoped to receive good news and be released from patching.  I remain hopeful but am starting to get worried.

On Friday they had a vision screening at school and she got 'red-flagged'.  The school nurse marked her for failing the test with her left eye.  I want to hope that the nurse or screener made a mistake.

I will be walking on eggshells til she goes for her appointment next week. I'm hoping she just needs new glasses...

Welcome back...

Thursday, September 27, 2012

Use Code Holiday10 to save 10% at Krafty Eye Patches

Holiday Coupon Code for Krafty Eye Patches




Holiday Kits Have Arrived :) 

Halloween, Christmas & Winter Wonderland
For Girls & Boys

10% off use code HOLIDAY10



If you haven't tried Krafty Eye Patches - check out our review of these fun and non-toxic patches  and fun eye patch kits for kids! 

Saturday, September 22, 2012

Book Review: Princess Pretty Patch - This Princess Has a Style All Her Own

Book Review - Princess Pretty Patch by Kerri Green



I'm always on the lookout for quality children's books about vision issues - wearing glasses, patching etc for Belle to read and share.   Princess Pretty Patch by Kerri Green is a new book, available on Lulu for $11 (in paperback version). 

This book is about a princess who discovers that the person she was made to be is the best person of all. It is about loving and accepting who you are, no matter what others think about you.

Belle started 2nd grade recently and is patching a few hours a day at school.  In anticipation of the kids having questions, I asked the teacher if Belle could bring in a couple of books about Patching to keep on hand.  One of the books that Belle brought in to share was this book, Princess Pretty Patch.

When I asked Belle why she selected this particular book to share with her class - she gave two reasons.

1) She likes that it rhymes.   In a family that is a big on Seuss, the fact that it rhymes makes this book fun for her. She said it is best to read it out loud because it rhymes.  Out of the mouth of 7 year olds!  I have to say that the first time I read it aloud to her, I had a hard time with the rhyming and felt it somewhat forced but my daughter would disagree.

2) She said she feels like Princess Patch because she doesn't fit in. At her age, sadly the fitting in - cliques, and 'girl drama' are pretty intense. I know that it is not easy to be in her shoes and wear her patch among her unpatched peers.  

 
Unlike many of her other books about patching that are more about the "why's and the hows" behind wearing a patch - stories based on seeing blurry, going to a doctor, getting glasses, needing to wear a patch... Princess Pretty Patch is more of a 'fairytale' of sorts with a big message about acceptance, standing out from a crowd, being yourself.   In the story there are 2 kingdoms - a kingdom that Patches and a 'perfect' kingdom that Matches. Princess Pretty Patch of the Patching kingdom doesn't fit in amongst the perfect 'matchy matchy' world.  The story is one of her coming into her own and accepting things as they are, being proud of her patch and being OK with not blending in with the crowd.  What a great message! 


This Princess Has a Style All Her Own

 
Backcover of Princess Pretty Patch

Because the Best person you can be is Yourself

To see a preview of the book Princess Pretty Patch on lulu:


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Patching Time is Decreased!

Eye Dr. Visit for Belle 9/22/12


Belle has been at 4 hours of patching daily for the past 8 months.  Patching over the summer proved challenging, but we persevered.  I thought it was going to be an issue with patching at school (2 hrs a day at school, and 2 hours after) in the second grade... But, she has been a real trooper.  After being in her new class for a week we started in with patching and she has been extremely cooperative.  After school she battles me to get her hours in, but at school its patch on at 9:15 and then off at 11:15, like clockwork.   We keep her patching at school to in-class only time when they are doing seat-work.  She has a seat up close so she is near the board.

So, off we went to the eye dr this AM for a re-check.

I tend to have a lot of anxiety before these appointments but today both Belle and I were being optomistic. I told her in the car on the way to the dr, that whatever he said about her patching hours that I was so proud of her for how good she has been about wearing it - especially at school.   She, as like always, told me that she hoped today he would tell her that she was done patching.  I told her "we shall see".

I could tell when she was in the chair getting her pre-test that things were going well. She missed very few letters with her 'bad' eye and didn't make attempts to uncover it or scooch forward.  When the doctor came in and did his exam things continued to look good. 

At this time, we are backing off from patching.   We are going down to 2 hours a day. Yes!

In the past, when we have dropped patching we have done OK and then regressed again.  The doctor mentioned that after our next visit in 3 months (end of December) she may be in a place where we could stop patching again. 

In the meantime, we will take the 2 hours for a win! 

This is the first time in forever that we will be at the 'recommended' 2 hour patching time per day.   Belle has patched on and off for over 3 years now. 

I hope and pray someday she beats this!  Maybe the end is in sight... I hope!


Recommended reading: 
NEI  - amblyopia treatment study showing 2 hours of patching just as effective as 6 hours for moderate Amblyopia
 

Wednesday, September 12, 2012

Innovative new electronic glasses designed to treat amblyopia in children

Amblyz from Xpand 3D

Treating Amblyopia with Electronic Glasses

This has got to be one of the neatest things and best news that I have read for children with Amblyopia!  A new way to treat Amblyopia using electronic glasses.  The patch could be a thing of the past! 

The glasses, named Amblyz, were developed by Xpand 3D and designed by Gigodesign to treat Amblyopia in children.  Amblyz glasses look similar to prescription sports goggles. The glasses then uses an electronic liquid crystal shuttering device that is programmable so that the glasses intermittently occlude the eye. The lens will alternate in between being opaque vs transparent, essentially like an electronic shade. Amblyz glasses  are rechargeable (can be done at night when the child isn't wearing them) and come with a charging cable. 

It's been a long time coming for Amblyz of which the prototype was developed in 2004.  Clinical trials and studies have been completed overseas (in the Middle East).  You can find info on the trials, research and development on the Amblyz site including links to the studies.

I want Amblyz for my child... When can I get these? 
Amblyz will be available in the US in December 2012 via select Opthalmologists and Opticians. 

How much do Amblyz cost?
They will be priced around $500  which includes a guarantee against breakage

What do you think? Would you  use these instead of patching?

Here are my initial thoughts on Amblyz. Or perhaps... my Questions about Amblyz
  • Will other colors or styles be available?
  • Will they come in different sizes?
  • How comfortable are these?
  • Durability?
  • Safety?
  • Is there a way to turn off the electronic shuttering when clear lenses are needed?
  • Will insurance cover these frames?
I think the concept of Amblyz is spot-on and love the idea!  My daughter hates patching and would do anything to not have to patch.  However, I think my daughter might not like the styling of these at her age though it would be easier for younger kids.  The Xpand website shows a single color/style choice (white and orange) - a range in colors would be nice. It also mentions an adjustable nosepiece but I wonder about the fit and comfort of them vs standard glasses that can be fitted and adjusted in so many ways.  Sizing is also a question/concern as they say they are for kids ages 3-10 years of age, that is quite a size range so I'd like to know if different sizes will be available. Of course, I wonder how comfortable are these to wear?  There is a page for Safety info on the Amblyz webpage that at this time says coming soon... Safety, of course is a concern.  One reason why we use the eye patch vs the eye drops (atropine) is that the eye patch is more controllable. I can choose and monitor exactly when my child is patching. I can also remove the patch when she needs the use of 2 eyes for safety reason - for example, during sports, phys ed, playground etc.  I suppose with these Amblyz you would just remove the glasses and switch to a separate pair during those times that occlusion would be a risk.  At around $500 I would also want to know about the durability of these, I am pleased to see they will come with a guarantee as that is quite an investment. I'm reminding myself as I complain about the cost/price that  Glasses are so expensive but good vision is priceless.  

So many questions... but I'm definitely going to do more research about these.

I would love to know what YOU think... Would you get these for your child???? What questions do you have?
 

Related Links
Xpand 3D - Amblyz website 
GigoDesign: The World's first electronic glasses for Amblyopia Treatment
No more eye patches - Kids with Amblyopia wear cool electronic glasses instead
HEALIO OPTOMETRY:Xpand launches electronic spectacles to combat amblyopia

Thursday, September 6, 2012

Back to school coupon codes Krafty Eye Patches

Back to school coupon codes Krafty Eye Patches


Are you ready to go back to school? 

Have you stocked up on eye-patches?   

Remember:  If your child is patching at school, you will want to send patches into the school nurse or their classroom teacher. Last year I underestimated the number of adhesive patches my daughter could go through during the school day - account for gym time, art class, recess, and just plain 'being a kid'.  


Krafty Eye Patches has 2 Great Back to School Coupon Codes for use on their website (www.KraftyEyePatches.com)
  • 15% Off All Deluxe, Super & Ultimate kits    Coupon Code: Deluxe15 
  • 10% Off all other products                       Coupon Code: School10  

Coupons can't be combined... However if you purchase 5 boxes of patches you will get the bulk discount and can apply School10 coupon



Krafty Eye Patches are now also available  in  Wal-Mart vision centers (TX & OH only)

Don't live in Tx or Ohio also available at www.Wal-mart.com boxes of 20 patches ship for .97 cents to your home from Wal-Mart or they will ship them to your local store for free pick-up







If you haven't tried Krafty Eye Patches - check out our review of these fun and non-toxic patches  and fun eye patch kits for kids! 

Monday, August 27, 2012

Adam and Aimee's Amblyopia story - Amblyopia Times Two

The following is reader submitted by Carolyn who shares the journey of her Aimee and Adam - siblings with Amblyopia. 





My amblyopia story starts in 2008 when my first child, Aimee, was just a month or two old.  Her then-pediatrician felt she was going cross-eyed a little more than most babies and suggested I have her checked.  The optometrist told me that because of her young age, we needed to wait and see if it corrected itself.  It appeared to and that was the end of that.... for a few years.

In late 2010, when Aimee was 2 1/2 years old, we began to notice the eye crossing again.  It started to happen more and more frequently, and I remembered her doctor's concern when she was a baby. When our insurance changed over in the new year, I began looking for an eye doctor.  Unfortunately, this was easier said than done.  I hadn't been impressed with the knowledge or care of the optometrist we'd seen in '08, and I decided to seek out a pediatric ophthalmologist - eventually I found one that also specialized in strabismus.  We had to wait all the way 'til March 1st for an appointment, but it was worth it to see someone I felt could really help.

By that point, Aimee was just a few months shy of 3.  They dilated her eyes, which she hated, but otherwise she was very cooperative.  It didn't take long before Dr. B. told me she needed glasses, which I had sensed but didn't really want to admit.  And then she added that she'd need to wear an eye patch too.  Not needing corrective lenses myself, I felt clueless picking out her first pair of frames, but we finally settled on a basic pink pair.

During the 3-week wait for the glasses, we took a two-step approach to explaining this to Aimee. First, we talked up the glasses.  We called them her "special Aimee glasses," emphasizing how pretty and pink they were, and pointing out all the people in the family who wear glasses.  When she seemed comfortable with that, we tackled the idea of the eye patch.   I'd ordered the Ortopads with the girly designs on them, so we told her it would be like wearing a cool sticker on her face.  We also compared her to One-Eyed Betty, Mrs. Potato Head's character from the opening scene of "Toy Story 3", who wears a patch.  She seemed to understand and accept it.

It wasn't so easy for me as her mom.  I worried that my beautiful little girl would be hidden behind a patch and glasses; that those would be the first and only things people would notice.  I knew that of all the health problems she could have, this was relatively minor and treatable, but it still broke my heart.  Nothing was worse, though, than putting on that first patch and hearing her start crying, "Mommy, I can't see, I can't see!"  I could have cried too.

It took me awhile to get used to her new look, but Aimee adjusted easily after that first day.  She never asked to take off the glasses and very rarely fought me about the patch.  She wore it full-time for only 2 months and then had improved so much that we cut back to half-days.  Her eye stopped turning with the glasses on, which meant she was not a candidate for surgery, and things were going well.

The hitch in the story, though, is that Aimee has a little brother, Adam, who was 11 months old when Aimee got her glasses.  Not long after the first visit to Dr. B., I was reminded I have an uncle who patched as a child, and it came out that my husband's grandfather wore one too!  Given that history, and his patching sister, Adam was given a 50/50 chance of having the same problem.  When he was 21 months old this past January, Dr. B. decided it was time to get him some glasses too, and also begin patching.

It's a funny thing with second children.  I adjusted to the way Adam looked in glasses in no time. And although I was disappointed that he hadn't escaped amblyopia, there was no heartbroken feeling this time around.  For his part, he adjusted with just as much ease, barely seeming to notice the patch and even asking to keep his glasses on during nap time!  I guess he probably couldn't remember his big sister without hers, so to him it was just natural.

Having them both patching has certainly been an experience.  They've never patched the same number of hours at the same time, so it can be tricky to keep track, but I'm thankful they both patch on the same side!  And neither has ever given me trouble if the other got to take his/hers off first.  They even went through a cute phase of wanting to wear matching patches every day!
 
 

Aimee is now 4 and her vision is 20/20 in both eyes with her glasses on.  There is still hope that her body will learn to straighten the eye without glasses and she could "outgrow" them someday. After 17 months of patching she was just allowed to stop.  We go back in November to see if her vision has maintained without it - fingers crossed!  Adam is a few months shy of 2 1/2 and is down to just 1 hour of daily patching.  He's been given "homework" so he can learn the pictograms to begin reading eye charts.  I've been told he will always need corrective lenses, but his eye should never develop a turn because we caught it so early. 
 
And that's where we stand in our amblyopia journey, times two!


 Thank you Carolyn for sharing your children's journey with Amblyopia.    Congratulations to Aimee on graduating from the patch after 17 months!   Please keep us posted on how Adam does - those eyecharts sure are tricky!! 

 




Saturday, August 25, 2012

Amblyopia Memes

Lately I've been having a little fun with memes on the Amblyopia Kids facebook page. What prompted me was that I kept seeing some pretty negative 'Lazy Eye' themed memes circulate on FB that were really hurtful.   However, as we know people are cruel and its out of our hands. However, we can take a more positive approach and so... in taking a higher road :)


Here's one that I made using one of the many "keep calm and _____ on" generators.


Keep Calm and Patch On


Keep Calm and Patch On





This one, I didn't make but I get a chuckle out of it.  Someone made it on one of the memegenerators.
If I had a dollar for everytime somebody asked if my daughter was missing an eye under patch....

Still has eye...wears eyepatch anyway


Still has Eye, wears eyepatch anyway


I know I have a lot of creative readers and fans at Amblyopia Kids so I hope some of you will make some Positive and/or funny amblyopia themed memes.. Please share!


Thursday, August 23, 2012

Believing is Seeing - Captain Carl's book review

A long time back, I received an email from Donna Bennet who is the author of the book Captain Carl's Vacation: Believing Is Seeing. Well, it turns out she is the parent of a child with Amblyopia who patches also and is the inspiration behind this 'pirate' series of books.  She sent my daughter a book with a lovely inscription in it, encouraging her to "believe in herself". 

Now, my readers will attest to the fact that Belle hasn't been a big fan of pirates. Nor did she care for one bit the association between pirates and her having to wear an eye patch. So, even though this book really isn't about pirates, she was pretty convinced it was because of the first sentence of the first page which referenced a pirate ship captain. Kids can be SO STUBBORN!

The good news is, kids are also fickle too and can turn on a dime.  Belle has recently decided that Pirates are really OK. She is now able to separate pirates from her wearing an eyepatch. Pirates have been redeemed. In fact, Pirates are more than OK because now she is pretty darn fascinated with anything to do with pirates. Guess what?  Off the dusty shelf came Captain Carl's Vacation: Believing Is Seeing.

After oh about the first page she declared that the book isn't really about Pirates, just "A" Pirate, Captain Carl.  In a nutshell, Carl is a Pirate turned Ice Cream man but he is stressed out. Belle thinks that this is pretty darn funny - and wishes we could have a pirate ice cream shop. In the book,  his 'crew' sends stressed out and grumpy Captain Carl away on a vacation to Upstate NY in the dead of winter.  Now, this is pretty funny to me because it happens to be where I grew up. So, the places in the book like Canandaigua and Bristol Mountain are destinations that I am extremely familiar with.  In fact, it was pretty cool to read the book and share with my daughter how the places Captain Carl was at were places I had been to and so had she (as a baby).  Belle likes that the main character (aside from Carl) is a young girl who wears an eye patch. She is also quick to point out that she thinks it would be dangerous to wear an eyepatch while downhill skiing!!!  Kids are so literal, but the illustration and storyline would lead you to believe that "Princess Patch" does just that.  It's all in the details!

Captain Carl's Vacation: Believing Is Seeing does include decent, kid-friendly and easy to understand explanation about why someone might wear a patch and also includes a 'parent section' after the story is completed explaining amblyopia as well as the specific condition impacts Rachel (the REAL princess patch) the inspiration for the books.

For more info:

About the book
The third book in the Petey & The Mean Pirates series, Captain Carl's Vacation...Believing is Seeing (Princess Patch), is a wonderful story that takes grouchy Captain Carl on a much needed vacation to (of all places) beautiful Canandaigua, New York! After the Captain begrudgingly realizes he won't be seeing the Statue of Liberty and the sky scrapers of the Big Apple, he embarks to the slopes of Bristol Mountain. There, he meets Rachel...a girl with an eye patch, but also a spirit that resonates strength and beauty! This book enlightens and teaches children that no matter what life hands you, if you believe in yourself you can do anything!

Ages: Preschool-5th Grade

Publisher: Three Chiquitas Publishing; 1st Edition (2011)




Related Link: A Pirate for a day

Wednesday, August 22, 2012

The Amblyopia Awareness Handout Card

Dealing with the Frustration of going out in public? 


Many times my daughter gets discouraged and upset when she is patching outside of the house. The reason - idiotic commens and stares from strangers.      Years ago, I used similar cards to pass out when people made comments about my Autistic son.  After commiserating with other Amblyopia parents over at the Amblyopia Kids facebook page, I decided to make up these cards to pass out that explain Amblyopia. They can be useful to avoid confrontation, or knowing what or how to say when someone makes a comment or stares at your child.    You can either save and print these cards out on business card stock or order them for just .20 cents per card at the Amblyopia Awareness Shop on cafepress.  More designs will be coming soon.


 The Amblyopia Awareness Handout Card

Amblyopia Awareness Handout Cards

Tuesday, August 21, 2012

Amblyopia at a 3D movie

So, I have ranted and raved over the years about how going to the movies causes great divide in our family. My son loves 3D movies but my daughter who has amblyopia has found them to be a huge frustration. On the few occasions we tried It seemed that most of the 3D effects were lost on her -- and we paid extra for that?  More often than not or family opts for the non 3D version of movies (besides they are way more affordable).

But then a movie that the kids really wanted to see came out and the theatre we frequent did not have it showing in non-3D..  We decided to give it  another shot.

During the previews she was grabbing out and responding during the trailer for Despicable Me 2 - it was very exciting to see this.  During the movie itself,  I didn't notice her responding very much to the 3D effects. She claimed she can see it "the same as everyone else". This is exciting news if it is true, and I look forward to our next eye appointment and seeing what our eye doctor confirms or denies.

Here's to 3D vision coming back!

Saturday, August 18, 2012

Back to School Specials Krafty Eye Patches


Back to school coupon codes Krafty Eye Patches


Are you ready to go back to school? Have you stocked up on eye-patches?   

Remember:  If your child is patching at school, you will want to send patches into the school nurse or their classroom teacher. Last year I underestimated the number of adhesive patches my daughter could go through during the school day - account for gym time, art class, recess, and just plain 'being a kid'.  


Krafty Eye Patches has 2 Great Back to School Coupon Codes for use on their website (www.KraftyEyePatches.com)
  • 15% Off All Deluxe, Super & Ultimate kits    Coupon Code: Deluxe15 
  • 10% Off all other products                            Coupon Code: Summer10  

Coupons can't be combined... However if you purchase 5 boxes of patches you will get the bulk discount and can apply Summer10 coupon

If you haven't tried Krafty Eye Patches - check out our review of these fun and non-toxic patches  and fun eye patch kits for kids!

Friday, August 17, 2012

New Amblyopia Awareness Items available

At the request of my readers, I have been working on revamping the Amblyopia Awareness shop on Cafepress.

While the shop is still a work in progress, I wanted to let you know that new  I Love Someone With Amblyopia  items have been added including a car magnet and more shirt sizes (including V-neck and plus size).

Also, stay tuned as more Kids t-shirts designs are added.


 Stay tuned, as I will be having some T-Shirt and Car Magnet giveaways in the future!



Thursday, August 16, 2012

Krafty Eye Patches now available for purchase at Wal-Mart

For Immediate Release: 

Krafty Eye Patches now available for purchase at Wal-Mart
Krafty Eye Patches 20-ct box
Krafty Eye Patches are now available in select Wal-Mart brick and mortar locations. The colorful and fun latex-free and hypoallergenic eye patches from SavCo Optical were previously only available online through the Krafty Eye Patches website.

The patches are being sold  in a 20-ct box of assorted colors that will retail at $6.48 per box. This pricepoint matches the price per patch of the 50 patch box sold on the Krafty Eye Patches website - minus the shipping charges. Additional quantities, color selection, and fun eye patch kits will still be available on the Krafty Eye Patches website.

As of August 2012 the patches are being sold in select Wal-Mart Vision centers in both Texas and Ohio.   With support, Wal-Mart will expand selling the patches in more states and locations. 

Don't live in Texas or Ohio?  Krafty Eye Patches also became available on www.Wal-Mart.com this week.  The price point is the same with just .97 cents shipping.  The Wal-Mart Site to Store Free Shipping may also be applicable depending on your location.
 




Related Links:
Review of Krafty Eye Patches
Krafty Eye Patches website

Are you Crafty? How to Make Your Own Eye Patch DIY

DIY Make your own eye patches

Are you crafty?  How to make your own eye patch.

I do not have a crafty or artistic bone in my body, nor can I sew.  However, I know that many of my readers are indeed quite crafty and talented.  Over the years I've collected these links to excellent tutorials that show how to make an eye patch step by step.  I am so impressed with how creative and fun these are!  Note - some of these patches require sewing skills, while others do not.




Crafty Corner - Handmade Eye Patch (sewn)
DIY Eye Patch 7 DIY Mama: Kids Amblyopia Eye Patch
Little Four Eyes: Free Eye Patch Tutorial (using craft foam)
How to make a No-Sew Eye Patch
How to Pattern for an Eye Patch (Sewn)
Instructables - kids eye patch to be used with glasses
patch side Kitschy Coo Tutorial Sewing an Eye Patch



Do you make your own eye patches? 

I would love to see pictures or learn how you did it. Please feel free to leave me a comment or send me an email!


Wednesday, August 15, 2012

Krystal's Journey - Amblyopia & Accomodative Esotropic Strabismus


The following is reader submitted by Antionatte, she shares her daughter Krystal's journey through Amblyopia and Accomodative Esotropic Strabismus.  


My name is Antionatte. I have an 8 year old daughter named Krystal  In 2008 when Krystal was 4 1/2 we noticed that every once in a great while her right eye would turn in towards her nose.  I took her to the optometrist, where she was prescribed her first pair of glasses.  She got a pink Disney Princess pair.  Her optometrist didn’t see a problem with her eye turn, and told us to just have her wear her glasses.

Over the next year her eye turn got progressively worse.  We were told about a pediatric optometrist in our area that specializes in such problems.  So we set up an appointment for her when she was 5 ½.  At this appointment she was diagnosed with Accommodative Esotropic Strabismus and Amblyopia.  We were told that he specializes in vision therapy, however because its effectiveness is controversial it is not covered by insurance.  

Krystal’s prescription was changed and she was prescribed bifocals.  She began weekly vision therapy sessions with the optometrist as well as daily exercises at home.  She did vision therapy for about a year with several prescription changes (which we had to pay for), but with little improvement in her eye turn or vision.  

In October of 2010 we changed insurance, and didn’t have insurance until December of that year.  Due to the change we all went in for eye exams with a providing optometrist.  I told him of Krystal’s diagnosis, and he told me she should be referred to a pediatric ophthalmologist so she could get a diagnosis through our insurance which may be able to cover treatment.  

In March of 2011 we saw Dr. Lanier.  She confirmed the original diagnosis, and prescribed yet another prescription for Krystal.  Her eyesight in her right eye was 20/200 and her left eye was 20/60, and her right eye was only working about 20% of the time.   We were given ideas on activities we could do at home in the place of vision therapy, and told to patch for 2 hours a day.


Within a few days of receiving her new glasses it was like something clicked!  She could see! She began to soar in reading, which she had previously had problems in, and her attention span in class increased.  Patching however wasn’t such a success.  

We patched 2 hours a day for the first several months, with improvement.  Every day was a struggle, and the patches we were using were not gentle, and sometimes left her looking like I beat her.  Eventually we changed to ortopad and she didn’t have a problem patching.  We were going in every 4 to 6 weeks and for the first six months she was making progress.  Around October of 2011 she wasn’t making as much progress, and we were told to go up to 4 hours.  

We could still do this without too much inconvenience, as she was out of school that many hours.  She refused to go out with a patch on!! We had made several quick trips while patching with less than positive reactions.  Krystal had always gotten great remarks on her glasses, but was now getting stares and rude remarks from ADULTS about the patches.  At almost 7 she knew something was off.

She still continued to make progress, but less than in the beginning. We were told to increase the patching time yet again to 6-8 hours.  This did not happen!  There was no way she would wear a patch to school. We tried on the weekends but 8 hours usually didn’t happen.  

At her one year checkup with the ophthalmologist in March, her vision had improved to 20/40 +2 in her right eye and 20/25 -2 in her left eye.  Her amblyopic eye had improved and was now working about 80% of the time.  By July however the improvement stopped, and had gotten worse in her amblyopic eye.  We were told to patch all of her waking hours.

This was a wakeup call to me, so we started enforcing the patching and not taking “no” for an answer.  I have had to enforce her wearing a patch out in public, even if people stare or make comments.  I bought a new DVD, books about other kids who patch, showed her patches and made and bought just about every patch under the sun.  It seems to be working, because she isn’t fighting as much.  I can tell when she is nervous in public though, because she will growl and say “I am a pirate” and look scared.  I would like to find another girl her age to video chat so she can “know” someone with the same problem, or maybe get a local group together in our area.  She seems to be excited about these possibilities.

I have no doubt she will not be patching in school.  But hope it works none the less.  We have another appointment this week, so we will see if her commitment is paying off.  I feel bad for her.  There are so many problems she could have that are worse, but for her this is real and is seen as the worst it gets. 

 In a world of looks she is defined by the direction of her eye, or a piece of material covering it and not by the great person that she is.



Thank you Antionatte  we wish Krystal the best of luck and hope you will keep us updated to her progress in the future. 

 

Tuesday, August 14, 2012

I Spy a Speccles Strap - Clear Eyeglass Retainer for Kids

When your young child wears glasses, keeping them on their heads is half the battle - keeping them unbroken and clean, is the rest. And, when you have a young child in glasses - one who likes to play on the playground, run around, and just plain be a kid a headstrap or retainer on their glasses is a quick,  easy, and cheap solution.  I've dished the dish on eyeglass retainers in the past. They are not created equal and some work better than others.  
 
One complaint that I hear time and again is that glasses straps are ugly.  While functional... some feel that they look bad, stand out, draw un-needed attention, or what have you. Some straps are too easily 'defeated' by young children and glasses end up getting lost or broken as a result.

The Speccles strap was invented in Australia by a mother - not surprising!  It is a made of clear and flexible plastic tubing and comes in an assortment of sizes. As well, it can be cut to fit your child's glasses for a custom fit. You can hop on over to their youtube channel to view a video on how to fit a speccles strap - it is very easy and all you need is a pair of scissors.

I recently tried out the Speccles strap on my two children as well as shared with a couple of my friends.   Though Speccles are marketed to kids ages 0 to8 years old, they did just perfectly fit (no trimming needed) on my 11 year old son's head.  I understand that larger sizes are in the works.

My daughter is 7 and the Speccles required a small amount of sizing (trimming) that was very easy for me to do.  Now, my daughter should wear a strap given her activity level but her fashion sense and sheer amount of long and curly hair makes wearing a strap tricky and uncomfortable for her unless her hair is worn up and off of her neck.  Because the Speccles strap is clear it is not real noticable unless closeup so this is a good option for an invisible strap. Speccles will be very useful for dance class and dance recitals for her as well as for days when she wants to play outside without having to use her Rec Specs sports goggles that she uses for her organized sports. 

My friend who tried out the Speccles strap with her almost 3 year old reported to me the following: "She can't easily pull off and throw her glasses at me wearing the Speccles strap.".  In the past her child has been known to remove and toss her glasses while they are driving or on a whim when they are outside of their home. "The Speccles is going to save us a lot of money on broken and lost glasses, thanks!"

Speccles can be purchased for just $12.95 for a pack of 5 assorted sizes made to fit a variety of frame sizes.  For more info visit Speccles  on the web.

Watch the Speccles Promo Video


 


7 year old with Amblyopia named Liberty Sports Advocate of the Month

Meet the Liberty Sports Advocate of the Month

August 2012

7 year old Belle has Amblyopia.  

Read on to see how Belle has overcome many obstacles with her vision and protects her beautiful blue eyes while playing both Ice and Inline (Roller) Hockey.    Belle has been named the Sports Vision Advocate of the Month for August from Liberty Sports, the makers of  Rec Specs. 


Does your child with amblyopia play sports?   

Leave a comment below and share your Sports Vision success story. 





Monday, August 13, 2012

The war on patching

Belle asked me the other day if she would ever be able to have 2 eyes again like the rest of the kids. She is now 7 1/2 and has been patching since shortly after her 4th birthday. This is 4 years now of patching!

In that time we have known several kids start and finish patching and manage to beat amblyopia. No more patching for them. The best news ever!

I shared with B today that a child we know has "graduated" and how exciting that is.

"They get to have their 2 eyes", she said. "I hope it is soon that I get my 2 eyes again".

Me too.

I worked the angle that good news may be right around the corner and praised her for all her hard work! I know it isn't easy and we are working hard to not let this impact her quality of life and active lifestyle. But to whine and put myself in her place it really stinks to have to do this every day for hours on end.

Yet she continues to battle on and patches away..hour by hour, day by day.

We will win this war. Yes we will!





Tuesday, August 7, 2012

Amblyopia Kids checks out the Amblyopia Patch Kits from the Children's Eye Foundation

Amblyopia Kids checks out the Amblyopia Patch Kits from the Children's Eye Foundation

We at Amblyopia Kids first learned about this kit and jumped at the opportunity to check it out and share the scoop on the "what's new" in the world of Amblyopia. 


amblyopia patch kits The Amblyopia Patch Kit  is designed especially for children who are patching for amblyopia and can be purchased for $15 from the Children's Eye Foundation in both  Boys (Super Patcher) and Girls (Princess Patch) versions.   Physicians can also order Amblyopia Kit flyers by the notepad (100 ct) for free through the CEF. 

This kit is an excellent introduction or starter kit for those who are 'new' to patching or want to try out a sampling of adhesive patches to see what works best for their child. 




Ready.. Set..  Patch!



Proud  Recipient of the Princess Patch Kit
Belle was very excited to receive the giant envelope in the mail and knew it was just for her.  We had already finished our daily patching hours but she was very quick to open it up and check it all out. 

What's Inside:
  • a tips and tricks guide
  • A patching is fun sticker
  • Patching Calendar with reward stickers
  • coloring pages 
  • 30 eye patches (10 of three different patch types). *ours actually had 35
View what is included in each kit: 



Contents of the Amblyopia Patch Kit
Since we received it at the end of July she decided to set up her calendar for the month of August and has happily filled in the stickers for each day she got in her hours.  The Princess Patch kit came with a full page sheet of "Patching Princess" stickers with crowns on them. The calendar and the crown stickers all got the seal of approval from my daughter, who is a bit on the OCD side and also very diva.   She will enjoy completing the calendar this month and if we want to we can always print out calendar blanks to use once this one is full. Once the stickers run out you can simply 'x' off the days or use any other stickers.  Speaking of stickers.. the kit also came with a larger  "Patching is Fun" pink teddy bear sticker.... reminiscent of something you might receive after a trip to the dentist or blood lab. My discerning 7 year old took one look at it and rolled her eyes and made a comment along the lines of "you've got to be kidding me - how humiliating".   Ok, so that sticker wasn't a hit with her but perhaps for a younger child  and one who is new to patching they would likely enjoy it.  Belle has been around the block with patching and it is no longer "Fun" or novel in any way to her.

Princess Patch Coloring pages
All of the materials (Calendar, Patching Tips & Tricks guide, and Coloring sheets) come printed on nice heavy duty card stock and the graphics are very cute.  The girls kit features "Princess patch" theme and the boys a "Super Patcher" super hero theme.   All of these materials are also available in a FREE and printable format on the Children's Eye Foundation website.   Belle really liked the coloring sheets and colored Princess Patch to look like a 'mini-me' of herself, even giving the princess a light pink streak in her hair.  Go Girl power!

As listed on the Children's Eye Foundation information page about the kits -- 
Although these are included in the Patching Kit, you can also print them from your desktop printer:  Bonus!   
Super Patcher Kit
Patching Princess Kit




The Patches in the Amblyopia Kit
Patches - Front side


Patches - underneath side
The Amblyopia Patch kit includes an assortment of 3 different brands of patches - a total of 30 patches in total.   Our kit, actually had 35 in total but I am not sure if that was a fluke or not.  All of the patches are ADHESIVE and can be worn with or without eyeglasses.

The kit includes the following brands of patches
KRAFTY EYE PATCHES
ORTOPAD
NEXCARE OPTICLUDE


Ortopad Regular vs Junior
Our kit also included some Ortopad junior patches - a quantity of 5 in assorted 'girls' patterns. This is a smaller size patch that would be appropriate for patching a baby or very young toddler.  Or, you could use them to patch a doll or bear.  It is often fun for a child to have a 'buddy' patch along with them and a strategy that we have used frequently in our household.




Belle has tried all 3 of these brands of patches before and you can find thorough reviews of these brands and more here at the Amblyopia Kids website. 



I've put together a (hopefully) easy to read chart that details the key differences between them and put up some pictures of the front and backs of the patches. 




Comparison of the patches in the Amblyopia Patch Kit

Brand Cost Material Adhesive Look  Availability Review Link
Ortopad as low as .24/patch made of a mono-stretch, non-woven material that allows the skin to breathe latex-free and hypoallergenic available in white, beige, and assorted boys and girls patterns available online or thru some pharmacies Ortopad & Ortopad Elite girls patches
Krafty Eye Patches as low as .32/patch non toxic ink, monostretch breathable fabric and a great black out layer that is so thin it never touches or bugs the eye lashes. latex-free and hypoallergenic with time released 'sensitive' adhesive available in primary and bright colors as well as 'fun kits' to decorate available online only Fun Eye Patch Kits for Kids
Nexcare Opticlude as low as .10/patch  breathable, made by 3M hypoallergenic beige only available at most drug stores on shelves and online CVS vs Nexcare 

Patching with Nexcare









 Belle's Amblyopia Patch Kit Experience with photos:

Nexcare Patch
The Nexcare patches is the most inexpensive option as well as most 'utilitarian'. It is most like a band-aid - not surprisingly as it is made by 3M.  No color options are available - only beige, so it can be quite discreet or your child could decorate it with stickers or markers should they want to.  It is thin and very sticky.  My daughter doesn't care so much for the Nexcare patches as the adhesive is a little harsh on her very fair and tender skin.   The advantage to this patch is definitely the low cost and the fact that it is readily available to purchase at local drugstores right on the shelves. Be sure to check the size when buying - the "jr" size is very small and was what we used when my daughter was just 3.  Pictured here she is wearing the 'regular' size Nexcare patch.




Ortopad Elite Patch
The Ortopad patch is probably the most commonly used patch out there and comes in either white or beige or a plethora of patterns  with boys, girls or 'fun packs' available.  One thing that is nice is that the 'elite' Ortopad patches have little slits in them by the nose portion of the patch - it helps the patch sit comfortably on the face and under glasses as well.  The adhesive on the Ortopad patches holds well and is relatively gentle.  My daughter likes some of the patterns that they sell but doesn't like that you can't pick and choose what patterns when you order the full box. We always end up with a handful that she absolutely refuses to wear and run out of the designs she likes first.  We have also purchased an entire box of the patches (white) and passed them out to friends for them to decorate for her.


Krafty Eye Patches
 Krafty Eye Patches sell fun patch kits in bright colors. We have used these for a while and been very happy with them.  One standout feature of the Krafty patches is the fact that it has a blackout layer over the portion that goes right in front of the eye.  My daughter once told me that she could see right thru one of her other patches (I am not sure if it was Ortopad or Nexcare and she never would admit to it after that - sneaky). The blackout layer ensures no peeking.   She also likes the bright colors these come in like pink, purple, red etc and likes to decorate them.  I like that everything is non-toxic and safe. We have never had a rash or reaction, nor has her eyelashes or brows gotten pulled from these.

Note:  I do know that a common complaint on the Amblyopia Kids facebook page is that the Krafty Patches don't always stick well on some children.  We have not had that problem but always patch on clean and dry skin. I know that in the summer when my daughter is sweaty that this is a downfall to most adhesive patches - they can slide or cause irritation.  Many swear by using a little milk of magnesia under the patch or wetting the patch before removing it to minimize irritation.  For more advice on this very sticky situation check out The Sticky Patch - Help! Article 


Overall Thoughts
The Amblyopia Patch kit gets a thumbs up from Amblyopia Kids.  This is a good value and a great place to start if you are new to patching, or want to try out some different adhesive patches to see which adhesive patch works best for your child.  

Thank you the Children's Eye Foundation for letting us check out this cool patching kit and for putting it together.  You have taken something very overwhelming to parents and made it simple. Kudos to you!    We at Amblyopia Kids sure do appreciate all that you do for children's vision.