Tuesday, June 30, 2009
Yes, some of it - I am sure was just an age and stage that she was going through last summer. But, now more than ever I am convinced that so much more of it was related to vision. Yesterday we went to the boardwalk and it was a completely different experience. She wasn't afraid, timid, or clingy. Instead her eyes were open to the whole experience and she took it all in. She tried rides by herself and also with a friend (and one with Mommy). She pointed things out to me and she came into her own.
The day was incredible.
With improved vision.. comes a decrease in the daily fears and obstacles of the past. I am so proud and happy for Belle and her progress.
And she totally rocked her prescription pink sunglasses from Zenni!
We had just one minor speedbump when she went into the FunHouse (Mirror house) and was following her friend but her friend got ahead of her - she walked right into one of the walls. Ouch! I guess I forgot for a minute that because of her Amblyopia she doesn't have very good depth perception and that the funhouse would be more difficult for her than for others.
She survived and came out with a smile though.
Wednesday, June 24, 2009
Diopsys, the company that makes the Enfant Pediactric Vision testing system, has created an online vision assessment for parents at www.freevisionquiz.com to help shed light on some of the more subtle warning signs of vision problems in young children.
The physician-reviewed, informational quiz, which takes only a few minutes to complete, is comprised of multiple-choice questions covering several areas that can “red flag” signs of a potential vision problem in children of various ages, including such actions as the inability to make steady eye contact, or involuntarily covering one eye to see something better.
Monday, June 22, 2009
In particular, today an article from Science Daily Treating Lazy Eyes With A Joystick discusses an innovative software/videogame that is currently only available for adults - but is in development mode for children.
Surely playing a video game, does seem like a "fun" treatment. Indeed.
Now Tel Aviv University's eye and brain specialist Dr. Uri Polat of the Goldschleger Eye Research Institute has developed a computer therapy that could spare kids from the ugly eye patch, letting them enjoy themselves during therapy. The treatment, currently available for adults only, corrects the activity of the neurons in the brain, the main operator of eye function.
However.. I am at a loss and mixed regarding the language used in this article which downs the use of an eyepatch. My daughter would beg to differ regarding that "ugly eye patch" - which if you have seen any of the pictures posted here on AmblyopiaKids.com are far from ugly. As for having fun, there is something to be said for a child wearing an eye patch doing healthy, active, indoor and outdoor activities vs being glued to a video game.
Still, it seems that technology and video games could indeed make the eye patch obsolete - which isn't a bad thing.. no, not at all.
Reversing Amblyopia is a great thing. As always, early detection is extremely important.
Jocelyn was just over 2 when we started noticing her right eye turning in a bit when she looked to her left. At Christmas time, family started commenting on it. We made an appointment with the ophthalmologist Jocelyn had seen at 2 and 4 months of age for an unrelated matter. By 2 1/2 she was in glasses. She had some vision loss in her right eye because her brain wasn't using it. By her check up 3 months later, her right eye was back to 20/20. Over time things have changed. At 4 we added bifocals to her glasses to keep her eye straight when looking at things closer up.
Just before 5 1/2 we added the patch. Two hours every day. We started out with the band-aid ones and she hated them. She was in kindergarten and did get questioned by the kids, but nothing too serious. She simply replied that she had to make her other eye stronger. After a couple weeks of sticky patches, I sent my mom on a mission to come up with a better plan. My mom is very creative. Well, after a couple of hours and some research, she came up with our No-Peek patches. Jocelyn loves them! She helps me decorate them and when having to wear them to school, her friends were very impressed. It became something the other kids looked forward to seeing in the morning - what will Jocelyn have on her patch today????
We just got back from our 4 month check up after adding patches. Her right eye has gotten much stronger and even called for a new prescription in her right lens and we only have to patch for 1 hour a day now. We go back in another 4 months (October). We'll see what the doctor says then. Jocelyn will be 6 by then and will have been wearing glasses to treat her amblyopia for 4 1/2 years. She does great with them and for that I am very grateful.
Learn more about No Peek Patches, developed by Jocelyn's mom and grandmother and sold through Etsy: No-Peek patches
Eye Mateys are felt patches that go over eyeglasses. Like the Patch Pals they have a slit for you to slip the nosepiece of your glasses through it, but no slit for the armpiece of your glasses. You could cut your own slit in the side of the patch for further fitting. The patches are priced from $7-12 per patch depending on if you want a solid color, applique, or custom design. I just checked their site and all the prices are marked down by 20percent off, so this would be a good time to stock up! Shipping is as low as $1.79.
The major difference between Eye Mateys and Patch Pals is the following:
- Eye Mateys have a black inner lining to help block the light going through the patch. This is a nice addition and creates better occlusion - especially for the light/bright colored patches that kids like.
- Eye Mateys come in an "infant/toddler" size that is suggested for kids 0-2 years old but can be used for children even from 3-5 years who have a smaller face. It is 20% smaller than the regular patch size. I am a big fan of this smaller size since I don't like how a lot of patches take up half of my daughter's adorable face!
- The designs on the Eye Mateys appear to be iron-on patches vs embroidered on designs - but this may just be the case with the patterns that I received.
To show you the flip side of the patches and the black/grey inner lining
I do find with the standard patch, like the Patch Pals - they take up quite a bit of her face. Even though she is 4 years old, the "toddler" patch fits her much better. To give you an idea of the size, the lenses of her glasses are about an inch high and 45mm wide.
If you have a little child, Eye Matey's toddler patches are "just right" in size!
Photos of the Eye Matey patch - Toddler Size!
Thursday, June 18, 2009
Our Experience with Head-Straps for eyeglasses:
The product is essentially fishing wire and tiny magnets. At this time it is no longer being sold as InconSPECuous but I believe is now sold as Invisiroos.
specifically made for children's glasses and made with clear tubing.
Functional Straps for Active children
My 8 year old son, however, is a completely different story. He has worn glasses for a year now and we have lost many a pair. He takes them off and just puts them down anyplace. So much so, that we have even tried out an eyeglass locator in our house. He is an active 8 year old boy. And, he has autism.
For him - an eyeglass retainer aka "the geek strap" is a must.
But, because he has autism that means he also has a ton of sensory issues. Kids are fussy about things that are too tight or restricting - for him these types of 'annoyances' can become major. Trying to find a strap that worked well at holding his glasses on, that is also comfortable to him - has proved almost as difficult as dealing with glasses, in itself.
1) Our "Old Standby" Strap that we have used pretty much since the beginning of our glasses adventure is one of the Chums adjustable straps. They make these in a variety of colors and made of cotton, braided cord, rope, etc. The cotton works the best for us in terms of comfort but it does fade, get stretched out, and worn easily.
This retainer slides over the ends of your glasses like a sock and uses a bead of plastic slider to adjust the tension on the back. It can be worn loose or tight, or anywhere in between. One thing is that if the bead gets pulled off completely then you will either have a chore at rethreading it, or have to go buy a new strap. In a pinch we have tied a knot in the back, instead of the bead. I don't really care for how this looks in the back, like a "tail" that hangs down but it gets the job done on holding Alex's glasses on his head. Note - the strap he is wearing in the picture is not the 'kids' size. The kids size one that they sell locally in stores is the rope style, not cotton which we prefer.
2) We recently tried out a Hilco strap - this brand of straps is sold through opticians, optical departments, etc. The strap was made of elastic and was adjustable (similar to a garment fastener). It attached to my son's glasses via small plastic loops that were attached to the elastic by a metal hinge. Alex didn't care for the elastic when I adjusted it snug and opted for a looser fit that held his glasses on, but didn't squeeze his head. I noticed after just a short time that the metal loops got discolored from sweat/moisture which was a turn off to me. Also, the hinges would flip causing the band to twist a bit. We weren't big fans of this strap.
3) We here at Amblyopia Kids are big fans of Framehuggers patches. These patches are custom made, fully occlusive and they work! The owner of Framehuggers, Camille Workman, is super to deal with and has been a godsend to me in helping us along our patching journey. As it turns out - she is working on a solution for a headstrap for glasses to see if she should market her own or add an existing strap into her inventory.
“Are you frustrated with the battle of keeping your child’s glasses from slipping? You take your child to get the frame adjusted to realize an hour later that their ears hurt but if loosened any … your back to the slide. There may be a solution to help. Camille Workman from Framehuggers, wants to hear from you…please call 208-860-7237 to request a FREE new eye glasses retainer (head strap) that may resolve your concern. She has many years working as a certified ophthalmic assistant in pediatric ophthalmology and as an optician as well. She had already helped thousands of patients with their patching needs (see www.framehuggers.com) but she is now looking to get honest feedback from parents interest in trying her latest idea; whether you child patches or not. She believes strongly in testing products and altering it when needed before selling them to her customers. She will be giving away eyeglass retainers to the first 24 parents who contact her. You can also reach her by email at email@example.com Thank you!”
You can read about this head strap in use by a baby wearing glasses over at Carrots Make you Blind?
This strap is comfortable, holds my son's glasses on his head where they should be - and prevents them from sliding down his nose too. The strap has velcro on the back and can be adjusted so that it is snug, or loosely hugging the head. My son likes this strap quite a bit and given the choice of this one vs. the elastic strap this is his pick. I believe it is because the soft fleece is comfortable, it doesn't squeeze, and it also doesn't have a tail that hangs down to "tickle" him. Note: when you put the strap on - you make sure that the prickly velcro goes away from the head, and the soft side faces in.
This strap isn't currently sold, but if you are interested in trying out a similar strap contact Camille at Framehuggers via the instructions above - you won't regret it!
Update: Camille from Framehuggers has been working on improving the strap so that it is less bulky and has an improved fit.
The new strap is definitely more streamlined but equally as secure and comfy!
Here's a few photos of it:
Check out Headhuggers!
Let me know what eyeglass retainer you use, love, hate - in comments!
Wednesday, June 17, 2009
On Katie's two and a half year bithday, I noticed as she was sitting way too close to the TV right before bedtime, that her left eye didn't look so straight anymore. My husband thought I was crazy. Slowly over the next few months it got worse. The second her pediatrician saw it, he gave me a referral to the same doctor who had unblocked the tear duct of said eye when she was 13 months old. She got glasses and after 4 days, we could really tell they were helping her. No wonder she was so shy around people and rowdy in the car. All she could see were talking blobs and whatever was in her lap.
We brought home a box of sticky patches about 6 weeks later. By the end of the day, all were gone. She was prescribed atropine, even though I really didn't want to do it. After 3 months, he decided it wasn't working, so we are back to the patch 6 hours a day, plus drops in both eyes. I've made her several patches, knowing that the sticky ones are just a waste of money. She always looks down over the top, or out the bridge of her nose. We are always fighting about it. I'm sad because I just want my perfect little girl back. I know it could be a lot worse, she could be really really sick, and not just have poor vision, but it's still so hard to know that she is as frustrated with all of it as I am.
People always ask about the patch. She has to wear it so much, it's inevitable. Kids stare. Her sister uses the words "lazy eye" a lot (what kid can say amblyopia, and what adult actually knows what it is anyway?) and those words bother me. I'm always thankful for those who understand and have experience with it and encourage me that it gets better. I'm thankful for the internet and being able to go to the amblyopia kids website and looking at all the pictures of girls just like her in their patches, showing her that it isn't that bad. I'm thankful that other than this one thing she is healthy. Some days patching is harder than others (today was a hard day) and I hope that at our next check-up we'll find that things are going better.
Read more about Katie's story at her mom's blog CutieFruity
Author: Danielle D. Crull, ABOM. Miss Danielle is an American Board of Opticianry Master-Certified Optician specializing in children.
I purchased Apple Patty Patches from Framehuggers. You can also order it directly on the Apple Patty website for $16.95 with $2 shipping and get an autographed copy.
View some sample pages: http://applepatty.com/samples/index.html
Apple Patty is a little girl who loves Apples. Apple Patty is having some problems seeing - she has Amblyopia, or "apple-y-opia" as she calls it. She loves her Apple glasses, but doesn't like to wear her eye-patches. Her mother comes up with an activity that she can do to keep her busy during patching time, to run out the time on the clock during patch time. In the end, Apple Patty meets with success and overcomes her Amblyopia.
My daughter likes the story of Apple Patty and it has helped her learn about Amblyopia. When we were headed to the eye doctor this week she told me that she hoped that the doctor would tell her that "he couldn't tell her good eye from her not-so-good eye". While that didn't happen this time, she understood when the doctor said that her eye is doing better.
The author, Miss Danielle, includes a few pages of information about Amblyopia and advice for parents at the end of this book. I found this information invaluable to me. In particular, the tip about making the clock be the enemy on wearing the patch - not you. When my daughter fights me about wearing her patch it has been extremely helpful to point to the clock and say "until 5pm" or whatever time we need to end that day. This way the clock is the bad guy, not me. It makes it easier on me also.
I recommend this book for kids with Amblyopia and their parents. It is thoughtfully written, the illustrations are cute, and it is truthful. I appreciate that there is no comparison to "being a pirate". My daughter isn't yet reading independently but she is starting to learn to read - one complaint she often tells me is that "the letters are so tiny". This book has a very large and bold print, which is friendly to children with visual difficulties.
You can purchase Apple Patty Patches directly or via a few patch sellers like Framehuggers and MYI occlusion patches. I wish it were more widely available, like Amazon.com. Also, the price at close to $20 is a bit high for a children's book - but for the high quality (library bound) I feel it is worth it. I would like to see a copy of this book in the children's area or waiting rooms at the Eye Doctor - a copy absolutely belongs there.
Watch a video of my daughter "reading" Apple Patty Patches:
Apple Patty Pictures:
For more info: www.applepatty.com
Tuesday, June 16, 2009
Getting my daughter to wear her glasses for dance class has proved very challenging. She tells me that ballerinas don't wear glasses and that she doesn't want to wear them for dance class. She also tells me she is afraid they will break, fall off, or she could lose them. I offered the alternative of her wearing her spare glasses, and she gives me the same line. She simply will not wear them to dance class. I know she would see better and probably dance better if she had them on, but I'm losing the battle. At this weekends recital several of the older girls who danced wore glasses. When the DVD comes, I will watch this with her and point it out that ballerinas and tap dancers can indeed wear glasses -- I hope this helps. You might be thinking, just strap the glasses onto her head. Again, I lose - her argument is that the straps are for boys. Her brother wears a glasses strap every day and she vehemently refuses.
When I learned about the inconSPECuous eyeglass retainer, I believed that I may just have found the answer. Unlike the glasses straps that my son wears that are very noticeable, this one is clear and barely visible.
- Prevents repeated removal of spectacles
- No more slipping down the nose
- No more falling off during activity..... Prevents damage or loss of spectacles
- Easy to attach and remove glasses with strong magnetic clasp
The product is actually quite simple. It consists of fishing line, small magnets, and plastic tubing. I didn't realize at first that this is a fairly permanent solution to hold on your glasses. Initial prep takes a few minutes to attach the tubing, size the line, tie it off at the right size, trim the excess, and then using a hair dryer to heat shrink the tubing onto the earpieces. Because of this, I put this on my daughter's spare glasses that I'm trying to work into her dance class routine.
Here's a photo of the back of my daughter's head wearing the inconSPECuous retainer. I added an arrow to show it, you can barely see the magnetic clasp. It does a good job of holding her glasses on her and is barely noticable.
Belle doesn't like, however, that she is unable to take her glasses off by herself with it in place - the magnet is too strong. If you have a child who takes their glasses off a lot, this may be a selling point. My daughter is generally very good about keeping her glasses on so this frustrates her a bit. I worry that she'll try to take her glasses off while this is on and end up with broken glasses - I'm hopeful the magnet would give before that happened.
I also have a bit of a concern about a magnet being near her head and brain for any length of time. I believe for the short time that she is in dance class this is probably OK and no different than a jewelry clasp that uses a magnet. Still, for a family with neurological issues this makes me nervous.
Ballerinas and princesses can and do wear glasses.
Here's Belle in her glasses with the inconSPECuous retainer dancing along to her favorite Prima Princessa Presents Swan Lake DVD.
I'm usually not happy when I'm wrong!
Today I am thrilled.
The doctor confirmed that she is indeed making improvements in her weaker (amblyopic) left eye. Where she couldn't even see the big E, now with her glasses on she is able to make it down to the third row. She did struggle a bit with the letters and try to crane her neck and lunge forward. She was giving "O" for an answer instead of "C" and mixing up "H" & "N". These are very minor errors but they wanted to test a bit a more. So the doctor switched to the pictures chart and tested her eyes again. When she said a bicycle was '2 people holding hands' we figured she really was guessing. Belle is really cute when she gets her eyes tested and points out to the doctor 'those letters are just soooooo tiny'. He is a good sport and goes along with her. So, aside from the few times she guessed or clearly was stuggling (that still hurts to watch) she is doing much better.
Her vision is improving overall. And, not just her weaker eye - even her "good" eye is improving.
Her glasses prescription will remain the same and we are to "keep on patching" and doing what we are doing. I feel now, even more committed to staying on top of Belle with the patch and make sure we get in our daily patching.
Another good visit to our eye doctor. Belle and I left with big smiles on our faces. She goes back in 2 months.
Monday, June 15, 2009
On the other hand, when I told Belle she was going to see the eye doctor tomorrow she screamed out "yay!". She loves to go there. I'm glad she is so cooperative and isn't afraid of our eye doctor. It makes a world of difference.
Wish us luck!!
Thursday, June 11, 2009
Tuesday, June 9, 2009
From Sue Barry:
I have just written a book called Fixing My Gaze: A Scientist's Journey Into Seeing in Three Dimensions . The book describes my experience and that of several others with vision problems, especially crossed eyes and amblyopia.
I have been cross-eyed since early infancy and had three childhood surgeries which made my eyes look straight but did not provide me with normal vision. About half the people with crossed eyes develop amblyopia by relying on one eye for seeing and turning in the other. The other half alternate vision between the two eyes. They alternately look with one eye and turn in the other. I did not develop amblyopia but alternated vision between my two eyes. I had no stereovision (3D) vision and a lot of problems learning to read in school and learning to drive.
When I was 48 years old, I consulted a developmental optometrist who prescribed for me a program of optometric vision therapy that taught me how to aim my two eyes at the same place at the same time. I gained stereovision and a remarkable new way of seeing the world. My story was first described by Oliver Sacks in the June 19, 2006 issue of the New Yorker in an article titled Stereo Sue.
I am a neurobiology professor at Mount Holyoke College so I have studied vision science very closely. In my just published book, Fixing My Gaze, I describe not only my story but that of many others including several people with different forms of amblyopia. I describe the science behind binocular vision, how the vision therapy works, and the differences in perception between a person with amblyopia or strabismus and a person with normal vision. I discuss the problems that binocular vision disorders can cause in school, sports, and driving and the different treatments for amblyopia and other binocular vision disorders.
The book is written for the general reader particularly for parents of children with vision problems.
You should be able to find the book in your local bookstore, and it is for sale on Amazon.com.
Sue Barry also writes a blog for Psychology Today called Eyes on the Brain:
Last Sunday the kids had a very special day - breakfast with Nana, the museum, and grocery store. Of course I took pictures...
Amblyopia Kids are Framehuggers Fans
Thursday, June 4, 2009
In September, Maggie will turn 4 years old. At 22 months, she knew how to count to 10, and now is able to recite the letters and their sounds with ease. Impaired vision has not hampered her ability to learn quickly. She was diagnosed with amblyopia in December of 2007 at just over 2 years old. Of all the checkups she has had, it seemed that her vision either maintained or improved, but not this check up.
The smaller letters were more difficult to read this time for her. Before, she read them with ease, which was very encouraging to hear. Then it was time for the eye drops to dialate on this visit to check her prescription. Considering her dad had to hold her down and the whole office witnessed her loud yells, I think she did okay. Thirty minutes later, she reluctantly went back to the doctor's office to determine if her prescription had changed.
Sure enough, we received a new one that would be stronger. She had become more far-sighted in the past 3 months. Her doctor said she could hold off on patching again, and we would see if the stronger prescription would help. I had noticed that her amblyopic eye was beginning to turn in again over the past couple of months, but not enough for the doctor to recommend the patches for now.
I placed an order for new lenses in her glasses. I wonder, will she have headaches with her eyes adjusting to the new prescription? My husband and I have nearly perfect vision, so it's not something we could know from personal experience. Her next appointment is in 8 weeks, and we shall see what adventure lies in store.