method of slowing the progression of nearsightedness in children shows promise (SMART Trial)

I just ran across a press release today announcing promising early results of a study named the Stabilization of Myopia by Accelerated Reshaping Technique (SMART) Trial –  The study is a five-year trial of a treatment called overnight orthokeratology (also known as corneal refractive therapy or vision shaping treatment).  In this treatment, patients wear a rigid, specially designed contact lens at night which reshapes the cornea leading to clearer vision during the day.   This treatment was approved in 2002 for use in the USA to treat myopia (or nearsightedness), and I believe it has been used elsewhere, particularly in Japan, for longer.  It is worth noting that the treatment does not cure nearsightedness; like glasses, it only treats it.  When patients go for a few nights without wearing the lenses, their vision will go back to their normal prescription.

The exciting thing about this trial, though, is that it is looking at whether overnight orthokeratology can actually slow or even stop the progression of myopia in children.  Myopia tends to get worse through childhood, and for parents with young children who are already significantly myopic, the idea of their vision worsening is very concerning.   As mentioned above, the SMART trial is a 5-year trial that will follow 300 children aged 8 – 14.  The trial is only one year in, however, the early results appear promising.  The children wearing the overnight orthokeratology lenses showed little to no change in their myopia, compared with those who wore soft contact lenses during the day whose nearsightedness got progressively worse.  It is worth noting that these results are coming from a press release, and nothing has been published in a peer reviewed journal yet – this isn’t surprising as the study isn’t finished – but it is building on existing studies which have shown similar results.   It will be very interesting to watch this study and see how the results look at the end of the trial, but the possibility of arresting the progression of nearsightedness is very exciting!

If you’d like to learn more, you can read more about the treatment and study in this article: Nighttime contact lenses show promise in controlling nearsightedness,  or see a video of two young girls using the lenses at Bright Eyes News.

Week 6 – FrameHuggers

June09Washington 101Welcome to our patch challenge- WEEK 6.  My daughter is 2 ½ and has Amblyiopia.  We are currently trying to help her brain recognize her right eye.  She has perfect vision in her left eye and -7.75 in her right.  We have stepped up the patching since her vision has actually decreased the last 2 visits.

This week (last 3 weeks) I tried FrameHuggers

http://www.framehuggers.com/

Cost: 1 patch = $19.99 each + Free 1st class shipping

2 patches = $19.99 each + Free PRIORITY UPGRADE (SAVE $8.00)

3 patches = $19.99 each + Free 4th patch (see details below) + FREE PRIORITY UPGRADE(SAVE 27.95)

June09Washington 109

Ratings given 1-5 for the following criteria.

1 Doesn’t meet my expectations, 5 Exceeds my expectations

Cuteness Factor           5

Durability                      5

Full Eye Occlusion        5

Performs with sweat     5

Patching Support          5

Reusable                      Yes

Total patching hours for the week (As many hours as we can), Actual = around 70 hours YIPPEEEEEE!!!!

Elly’s response: We started trying a new patch yesterday and mid-day she took her glasses off and said, “Can I have my soft blue patch now?”  Also, about a week ago 2 different moms stopped us at Subway and asked where I found the patch.   They said their young kids at home are patching without success with the sticky patches.  I sent them to FrameHuggers and Elly started telling them that this patch was much better and that she can wear it all day to make her eyes stronger.  It was very touching.

Mom’s response;  This patch comes about as close as a mom could hope for to a perfect patch.  Camille at FrameHuggers is a great resource as she has experience working with children in an ophthalmologists office.  She custom makes each patch for your child’s glasses to ensure a good fit.  You can tell that she genuinely wants kids to improve their vision and is passionate about what she does. We actually were wearing the patch and it kept sliding down, so I called her and figured out we were putting it on the glasses wrong. (Guess I should have watched the video first)  http://www.framehuggers.com/instruction%20for%20use.htm That solved our drooping problem and there is literally no way that Elly can see.  The patch is very soft and comfortable to wear.  The down side is that it is a little bulky and does get hot when you are playing outside in 100 degree weather.  We only removed the patch for bath time, bedtime, and outside playing time when it was really hot.  She did AMAZING and kept the patch on for every waking moment the last 3 weeks.  My hubbie tried it on and said it was the most comfortable of all the patches.  We did wash it in cold water as the instructions said and it held up pretty good.  I would, however, not recommend adding a character to the front as we did.  The Nemo faded in the sun and is now a shade of peach.  Lots of kids comment on the Nemo and also want to try touching it.  My next one will be just a fabric one.  Last, but not least, I will warn you that they are expensive.  BUT, if you consider that I would have spent at least $7.00 a week on sticky patches, the cost for patching would be close to $28 per month, then this patch would pay for itself in 1 month.

explaining the whys and hows of glasses to young children

I recently came across the website whyzz.com – they try to answer the why and how questions in a way that understandable to kids ages 3 to 8.  I found a few questions and answers that might be of interest, especially if you find yourself trying to explain glasses or vision to young kids.  Some of the answers are a little high level for young kids, but I could really see them being of use if you were talking with a class of preschoolers or older.  What I really like is that all three of the answers include further activities and questions for exploring the topic more.

Here’s the three questions I found that have to do with glasses and vision.  There are no questions about patching, but you can contribute your own question and answer if anyone wants to take that on.  Are there other vision-related questions you’ve had to answer for kids?

Reader question: prescription swim goggles – updated

I know there was a little discussion about swim goggles in the post on when the glasses come off, but I just got this question from Heidi and wanted to put it out there and see if there were any other thoughts or experiences.  -Ann Z

Have you heard from any parents re: swimming w/kids in glasses or learned about prescription swim goggles?  Bennett’s 4.5 years old now and we’ve not done swim lessons since I’ve been having babies two of the last three summers, but now this boy needs some swim lessons.  🙂  But I’m not sure how to handle it with the glasses and the sites I explored online only have prescriptions to -8/+8 for swim goggles.  We’re -12 & -8 so I’m not sure what we’ll do…

Anyone have experience with swim goggles for their kids, particularly with high prescriptions?

Update: I was just sent this link to prescription goggles by @nicolemarr via Twitter (um, by the way, Little Four Eyes is on Twitter, user name is, unsurprisingly littlefoureyes).  The goggles are not specifically child-sized, but they do offer the option of small bridge, the prescription range for these are +4 to -10, so a larger range than some.

Last day to vote in the Children’s Eye Foundation photo contest – updated

Update – the contest is now closed.  According to the website, results will be posted by July 10.  I wish I’d grabbed final numbers, but that doesn’t seem to be an option.

It seemed like the photo contest would never end.  For months, people would ask me if the voting was over, and how Zoe and other Little Four Eyes kids were doing.  Well, voting is over at the end of the day today.  Currently, I can’t even get to the CEF website because the server is too busy.  Some of our photos are doing quite well in the contest, I’m hoping at least a couple will be in the top 12 – winning the submitter a digital camera.  As for the photos that will be in the calendar… Children’s Eye Foundation says they’ll choose the photos from the top vote getters, though I don’t know what the cut off will be.  If you manage to get in to vote, I hope you can vote for a few of our pictures (or all of them), so we can get as many as possible in the running to be in the calendar.

Click on over to the photo contest post to see all the pictures submitted and links to vote.

open thread – responses

I’m pretty used to people commenting on Zoe’s glasses, and it seemed like she was getting fewer comments, but then there’s always those days.  This weekend we were out and about running errands, and I have no idea what it was, but we kept getting stopped by people who wanted to ask about her glasses, or tell us how cute they were (yes, we know).

Do you like when people comment on your child’s glasses?  Or would you rather they not make any big deal out of them?  I know I go back and forth between enjoying the attention Zoe gets and just finding it a little too much – for her part, Zoe doesn’t seem to care.  What’s the stranges comments or questions you’ve gotten (the weirdest for me was when someone asked if Zoe was wearing Sarah Palin glasses, which was just inexplicable – Zoe’s glasses were way cuter.)?

And this brings me to a related question – I’ve noticed more children who are patching, and I want to say something to them, along the lines of congratulating them for working to strengthen their eye, or complimenting the patch if it’s colorful or fun, but from reading the stories here and other places, it seems that kids who are patching are more self-conscious of the patches, and that a lot of parents work hard to get them to forget they’re there during the patching session.  So I’ve stayed quiet

noticing

This morning when I dropped Zoe off at daycare, one of the teachers told me that Zoe had come up to her yesterday and said, “Kathy, you wear glasses.  Just like Zoe!”  It was nice to hear that Zoe’s speaking more in full sentences (she’s been pretty shy about talking at daycare), but it made me a little sad that she’s now noticing who wears glasses and who doesn’t.  Ever since she got glasses, I’ve pointed out when others wear glasses, whether it’s characters on tv shows, or toys, or other children or family members – obviously not everyone I see, but I do make it a point in some cases.  I want her to see how wonderful and normal glasses can be.  But now I’m wondering if that does more to emphasize that glasses are something strange or different.

Any thoughts?  Do you point out other characters or people in glasses to your child?

New guide for ordering glasses online

I’ve finally finished putting together the guide to ordering children’s glasses online, pulling from many of your comments and experiences.  It’s linked from the Resources and the Collected Wisdom pages.  I’m still quite hesitant about ordering primary glasses for Zoe online, but we had a good experience ordering her prescription sunglasses.  I’d love any of your comments or suggestions for the guide!

Missing pair of glasses.

Elly’s favorite glasses are back! Our back up pair of glasses has been missing for over a month. The search hit high gear when one of her cable temples to her current pair broke in half. Could we find the extra set, NO! Where can small glasses hide???

Well, I have looked in many unusual places for the last month… only to find them when cleaning out the pile of papers on the counter today. Guess I killed two birds with one stone!

“My favorite glasses are back!” was the shrill squeal I received upon showing my prize find to Elly. She immediately threw her newer pair with the correct prescription off and put the others on. She was sooooooooo excited to have them back and they do just seem to sit perfectly on her face. I think I am going to have to pay the $50 to have them change the lens on the right so that they are in the most current prescription and she can wear them any time she wants.

Has anyone else lost a pair of glasses? These things are like gold – how and where did you find them, so that next time our get lost, I will know to check those places first!

Your Stories – The strongest one-pounder: Part 2 – in school with an individualized education plan

This is the second part of Dina’s story about her son Will.  Part one introduced her son “Will,” now 8, who was born prematurely and subsequently spent 5 long months in a Newborn ICU.  I asked her to write more about working with the school system to support a legally blind child.  – Ann Z

Will endured numerous surgeries trying to save his vision, and we are buddies with a lot of eye specialists as a result! My family considers ourselves lucky that we succeeded in saving his eyesight in his left eye. Given that Will has only one eye that works, it is essential for him to wear glasses to “protect” that eye. Ever since Will walked, he has worn his glasses every waking moment. Glasses, sunglasses, swim goggles…you name it! His school self-portraits consistently reflect a little boy with glasses.

Will entered the public school system when he turned three. As a result of being born prematurely, he needs extra help in a number of areas, so we have always worked closely with a large school team. Will has a curriculum custom tailored for his special needs (called an “Individualized Education Plan” – or IEP). The creation of his IEP is a team effort, and it outlines every accommodation needed and every specialist that works with him to put him on equal footing with his peers. Will’s IEP includes a classroom teacher and 10 specialists; the document is legally binding and is negotiated annually, with periodic addendums made, as needed. His specialists include many therapists, which are on staff at the local elementary school, including a special ed teacher, physical therapist, speech therapist, and occupational therapist, among a few others. His IEP identifies all specialists required to meet his needs, whether or not they are on staff at the school; there are two specialists brought in regularly because of his low-vision status: a “teacher of the visually impaired” (TVI) and an “orientation and mobility instructor” (O&M).

The TVI works directly with him and provides consultation to the rest of his educational team to help him integrate him into the mainstream school. She helps adapt materials (make sure books and materials have large print, makes sure the library gets books for him, etc), educates the staff on what he can / can’t do (how close he needs to sit to see things, etc) and acquires special tools and devices (like magnifiers, computer programs that blow up text, etc) and works with him and his teachers on using them in the school. Basically, she helps him to learn what other kids without visual impairments are learning.

An O&M instructor’s role is to teach him to use all of his senses so he is able to travel safely from one place to the next, given his low vision. Basically, he qualifies for O&M support since he is legally blind. I have mixed feelings about O&M support because I have learned that O&M philosophy can be “black and white.” When Will first entered the school system his O&M teacher wanted him to use a cane for the blind simply because his test scores resulted in a legally blind classification. However, with one well-functioning eye, he didn’t demonstrate any issue in navigating, so our family didn’t see any need for a cane. We battled this issue with one O&M teacher for a number of years. With our very large IEP, this was the only point of contention and it just simply wouldn’t go away since philosophically, the O&M teacher and our family couldn’t see eye to eye. My family got doctors opinions backing us up, and eventually a lawyer and special ed advocate. Happily, we never needed to go to litigation, as the O&M teacher realized that philosophically we were never going to get on the same page; she decided to transfer my son to another teacher. When we first were transferred to the new teacher, her gut instinct was “he’s legally blind, he should use a cane.” We felt the pit in our stomach of “here we go again.” But once she saw how easily he navigated through the world, she realized that he really doesn’t need one. To be honest, he doesn’t have good vision and I let the school team know that I wouldn’t be opposed to him learning how to use a cane if he needed it “sometime when he was older and alone in a new place” (like on a subway, or in a dark movie theater it’s not the top priority right now. The school agrees with us, his current O&M agrees with us, and most importantly, we can collaborate together to generate an IEP I am extremely happy with.

Will getting his new eye
Will getting his new eye

Sadly, Will hit a major snag last Labor Day weekend; out of the blue he woke up one morning wit his blind eye swollen shut and with severe light sensitivity in his good eye. He got into the doctor a few days later, but it was so swollen they couldn’t examine it. They scheduled an immediate exam under anesthesia to figure out what was going on. There was no clear diagnosis, except to say that sometimes when an eye has been not functioning for many years it has a meltdown, which is what happened to Will. He started experiencing glaucoma and his ducts were clogged, and the swelling was putting pressure on his good eye. There was no alternative but to remove his blind eye and replace it with a prosthetic. It was a psychological hit since we thought we were done with all of the “big eye stuff,” but, Will was a trooper, and our immense school team was supportive through every step. His friends made him cards, the principal welcomed him back, and when Will said he wanted to tell his class why he was wearing a patch, we didn’t quite realize he meant he was going to tell them everything…but he walked into school with his head held high and he shared every last detail, and he became the hero of the second grade. Which is why, in my eyes is his the strongest one pounder ever.

For more about successfully navigating through the school system, practical tips for handling the curve balls that come your way, and topics related to juggling work and life, I welcome you to visit my blog: http://frazzledworkingmom.blogspot.com/

Everything you wanted to know about children’s glasses

ACESplash1Danielle D. Crull (Miss Danielle) is an American Board of Opticianry Master-Certified Optician.   She specializes in fitting and dispensing glasses for children, and runs the website A Child’s Eyes, which has fantastic information about kids and glasses.

Miss Danielle graciously agreed to do an interview with me focusing on choosing and fitting children’s glasses.  The information she’s provided is invaluable!

Ann: What led you to your focus on pediatric eyecare?

Miss Danielle: I’ve been an optician for 21 years and have always felt that the pediatric portion of the eyewear market was underserved. Kids come in so many shapes and sizes, but the selection of children’s glasses was minimal. This was frustrating as an optician trying to get a really good fitting pair of glasses for my young patients. I always ended up modifying the glasses in someway to make them fit properly, for example changing temple lengths, replacing nose pads, etc. Unfortunately, most opticians are unwilling to do this. So I would end up seeing so many kids with poorly fitting glasses, only to have me refit them properly. I absolutely love helping kids with their glasses!!! So focusing on pediatrics seemed like the right thing to do.

Ann: On your site, you say that “children’s glasses are NOT small grown-up glasses.”  What are some of the main differences between children’s and adults’ eyewear?

Miss Danielle: The main differences are durability and wearability. Children’s eyewear is sturdier with spring hinges and tougher metals that can withstand a child’s activity level. They also have smaller bridges. Children’s glasses need to have the weight balanced particularly on either side the nose bridge because a child’s bridge isn’t fully developed yet.

Ann: One thing that was so overwhelming for us when we first started looking for glasses for Zoe was the number of choices in frames such as metal vs plastic frames, or type of nose piece or temples.  What are some of the reasons for going with one style or material over another?

Miss Danielle: It’s so wonderful to have a lot of choices for kid’s glasses nowadays. It’s much more fun than when I was little. Metal frames have the most adjustability in them. They have adjustable nose pieces that can be positioned separately for each side of the nose. I like these for most kids. Plastic frames have molded nosepieces for the most part and can not be adjusted. So it is imperative that they fit well from the beginning. Spring hinge temples (the ones that spring out on the sides and back again) are a must for every kid’s pair of glasses.

It’s important that you go to someone you can trust. There are a lot of “cheap” frames out there. I’m not talking about price necessarily but quality-wise. Things like solid solder points that you will never be able to assess on your own, so it’s best if you have someone who will recommend something of value. The last thing you want is a pair of glasses that is faulty in the soldering, which could be a real danger to your child.

Ann: What other things should we think about when choosing the frames for our children?

Miss Danielle: Make sure your child likes them!!! It’s is so important that they love how they look in them. Of course a little guidance goes a long way. If your child is the one who picks the most vibrant and craziest looking things and you can’t bear to see it on your child’s face for the next year, then stop by and pick a few frames out first that are acceptable to you and then let your child choose from what you have already deemed “OK.”

Ann: Although I just mentioned being overwhelmed with so many choices for frames, I know that many parents live far away from anywhere that specializes in eyewear for children, and they’re left with nearly no selection.  Do you have any advice for parents that can’t find glasses they like for their children?

Miss Danielle: Yes, drive the distance if you possibly can.  It is well worth it in the long run. Most likely you will only need to make the trip once, unless you need to use your breakage or scratching warranty. You can always get adjustments and minor repairs close to home, maybe at the place you bought your own glasses.  I always show the moms and dads how their little ones glasses should be fitting. This way they can make sure it is done properly at a local optical shop. I can’t emphasize enough how important fitting is. It literally can be the difference between OK vision and excellent vision. So, I think it’s worth the trip to get things started properly for your child.  I have patients who live in Iowa!

Ann: Given how quickly our children are growing, should we order frames that are a little big for our child’s face so they’ll fit longer?

Miss Danielle: No, this is not a good idea. It’s like buying shoes too big.  Glasses that are too big will likely slip down the nose and change their visual acuity to something less than what the doctor prescribed. That’s the best thing that could happen, the worst is that they are likely to look over their glasses, which means they will have no vision correction at all!  I see that out in public all the time, kids looking over their glasses.  What’s the point of spending money on glasses that your kids aren’t even looking through?    Would you buy shoes that are so big your kids can only tie knots in them and hang around their neck?

Ann: I feel like we’re visiting our eye glasses place for adjustments all the time.  Is it normal to need to get them adjusted every few weeks?  What signs should we watch out for that would indicate that the glasses need adjusting?

Miss Danielle: (Laughs) Everyday someone else comes in to my office asking if they come more than anyone else. I assure them that they are not alone. This is life with a little one in glasses. They go through phases, but more than likely you’ll become good friends with your optician. Personally, I enjoy seeing the kids often. If you notice any of the following you should stop by and have your child’s glasses adjusted:

  • glasses that slip down,
  • marks on the nose that are uneven or not symmetrical on either side of the nose,
  • marks on the nose that don’t go away after about 5 minutes,
  • glasses that are crooked on their face,
  • any marks behind the ears.
  • For the younger ones, if you notice any behavior changes, i.e.: doesn’t want to wear them, picking at their ears or rubbing their eyes, and watery eyes.

Ann: Any other advice or information you’d like to pass along to the little four eyes parents?

Miss Danielle: Glasses are very fashionable, but don’t loose sight (no pun intended) of what they are intended to do. Their function is to help your child’s visual system work properly. One thing parents often forget is to make sure the lenses are clean and free from scratches. I know cleaning your child’s glasses can be a full-time job, but it really is important. Remember, your child is still learning how to see until they reach the ages of 7-9, so make sure they are getting the best possible vision…and don’t miss those frequent visits to the eye doctor.

Many, many thanks to Miss Danielle for taking the time to answer our questions!

Your stories: The strongest one pounder you’ll ever meet – part 1

This story comes from Dina, the author of the blog Frazzled Working Mom.  Her older child has since been diagnosed on the autism spectrum and is legally blind; as a result, Dina has become an expert in navigating through the special education system to successfully advocate for him. She’s sharing the story of her son’s vision problems in two parts.  Watch for part 2 coming soon. – Ann Z

I was delighted to be invited as a guest writer this week on the “Little Four Eyes” blog. I write my own blog covering topics about the juggle on managing work and life, and Ann and I met in the blogosphere over our common thread of having a child with glasses. Though my story starts 9 years ago when I easily conceived my first child, and I thought that things were too good to be true. I quickly learned that they were.

After just 5 months and 4 days of being pregnant, my son was born after a 2 hour labor, which the doctors were unable to stop. Weighing about a pound and a half, my son spent five grueling months in the newborn ICU. Like many preemies, he was diagnosed with “Retinopathy of Prematurity” – simply called – ROP. Preemies are at risk of blood vessels in the eye growing “out of control” and causing damage to their retinas. In some extreme cases, retinal detachment can occur.

When my son was two months old (though still many weeks shy of his due date), we enrolled him in a study and he qualified for surgery much earlier than when it was typically called for. The study would “test” out this early treatment, but only in one eye. It was a study we almost opted out of because of his overall precarious health. I will be grateful for the rest of my life that we enrolled him in it, and if given the chance, I would stand up in Times Square and shout my endorsement of clinical studies. My son would be completely blind had he not been enrolled in this study.

The eye that did not qualify for the study (“the control” treatment) ended up having a retinal detachment; he was transferred by ambulance to the only hospital in Boston with a pediatric retinal surgeon for reattachment surgery. Despite close follow-ups, the doctor didn’t call the surgery a failure until several months later, and he gave us a “last resort” to save his vision. We drove a third of the way across the country to go to the #1 ranked pediatric retinal surgeon in the country. A long shot, but our only shot. It didn’t work.

So, the decision to put him in the study was thus far the best decision of my life. And the treatment from the clinical study is now the standard treatment; my son’s doctor told me that there is now a much lower incidence of blindness in pre-term babies because of this. So while my son lost his sight in that eye, he at least helped to save others who followed behind him.

My son is near-sighted in his “good” eye, and he wears glasses every waking moment to protect that eye as well. He wouldn’t be who he is without the glasses. They’ve been a part of him ever since he learned to walk.

He is considered legally blind, which makes life hard in many ways. But at least he can see out of one eye. I know a family from the NICU who didn’t participate in that study, and their child is completely blind. I haven’t talked to them in years, but I think of them frequently.

So while I wish we didn’t go through any of this, and our whole pre-term saga has many other layers to it, it has at least made us all stronger for having been down this windy road.

Read Part II.

You can read more of Dina’s writing at Frazzled Working Mom, which explores topics covering work/life balance and offers tips for handling the chaos in life.

short summer thoughts

Zoe's new sunglasses
Zoe’s new sunglasses

Zoe’s prescription sunglasses arrived the other day (we got her PD measured at Costco optical, and ordered them from Zenni).  Just in time for cold, rainy weather.  Of course. They need to be adjusted a bit, but otherwise look like they’ll fit.  Zoe’s thrilled, and keeps asking if she can wear them, and then mentions that it’s a “little too dark.”  Heh.  That’s what happens when you wear glasses inside.  It’s always about the learning experiences at our house.

I realized the other day, that once summer finally arrives here, if she’s wearing sunglasses outside, people won’t realize that she wears glasses.  Maybe a little like going under cover.

~ ~ ~

Last summer, Zoe was wearing her wire-frame glasses.  I was amused by the tan line on her nose that developed.  But last year’s tan line has nothing on this year’s.  Her new frames are both thicker plastic, and that tan line on her nose is extremely noticeable when she has her glasses on.  Good thing she wears her glasses all the time.

~ ~ ~

Sunglasses, swimming, goggles, sunscreen, sweaty faces and noses, and all that goes along with it.  It’s summer time, here – or will be soon!  (Apologies to our readers in the southern hemisphere).  So what are you all doing this season?

peripheral vision

My local paper just ran an article, “Kids can’t helping being kids, so let’s keep them safe” which talks about the fact that children don’t fully develop peripheral vision until they’re in their teens.  I have to imagine that for our kids with glasses, their peripheral vision is even worse.  The main point of the article is to remind parents and drivers to stay alert, especially since kids may not notice traffic on the street.