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Archive for May, 2010

Your stories – wearing glasses for protective purposes

May 29, 2010 8 comments

I asked Karla to write about her experiences with her son wearing glasses for protective purposes: because he has very low vision in one eye, he wears glasses to protect his sighted eye.  You can see a picture of her son in the previous post.  Many thanks to Karla!  – Ann Z

Caleb’s Story

I suspect Caleb’s story of why he has glasses started in a similar manner as that of most little ones with glasses. It really didn’t seem extraordinary, little did I know what was to come. A snapshot of him sitting for the first time at 5 month show his eyes looking a little hinky.  A quick visit with our friend and family optometrist landed us at a pediatric ophthalmologist in short order.  Quite frankly I was quite unconcerned I figured he had a large prescription or maybe something a little more serious, like strabismus.  I figured we would be doing glasses and patching and I was calm because I was sure we would be able to work through it.

Well, I was right Caleb does wear glasses and patch but for reasons very different than most kiddos who do the same.  Turns out Caleb has a quite rare condition in which fetal tissue was left in his eye during the 7 month of gestation.  He has a small cataract with a stalk of tissue connected to the cataract that goes through his eye and wraps itself around the optic nerve.  The diagnosis which we ended up getting from a retina specialist, after consulting with his partner, is Persistent Fetal Vasculature in the past it has also been called Persistent Hyperplastic Primary Vitreous .  We were told there would be low to no vision in that eye, but the other eye is just fine. Surgery is not an option because all doctors involved feel that in this situation the risks outweigh the gains.

So why glasses and patching?

Our ophthalmologist told us that recent studies show that people with monocular vision are more likely to be injured in their one seeing eye that those who have binocular vision.  She told us that we would need to put safety glasses on Caleb at sometime.  She then asked our about our family and when she heard about the young boy domination in our family she thought glasses would be good right away.  Another reason for the glasses is many kids with retinal damage stimulate their eyes by pushing on them.  The glasses prevent him from doing that.  We patch Caleb 2 hours a day to prevent atrophy, to see if we can teach him to use that eye some, and to preserve as much normalcy in the appearance of that eye as we can. We do not patch in hopes to regain vision.

Where we get support

Truthfully, I have not found many on line sources for Caleb’s particular brand of eye problem.  There are some on line support groups specific to his syndrome, but his presentation of PFV is not typical.  Some general websites I have found helpful are:

But, my greatest resource did not come from the Internet, it came from the early education program in our town.  First, I had to take a big gulp and call to inform them that I had a child that was visually impaired.  Ouch, just saying those words still hurt sometimes. Caleb actually will probably develop just fine but since he is technically visually impaired he can receive services from the early ed program.  Caleb has a teacher whose goal is to know exactly what he sees and what accommodations he will need by the time he enters preschool.  I have gotten advice on patching, and keeping his glasses on and have been loaned items to make us more successful.  Caleb also receives patch samples, as well as all of his glasses and lenses until he is three, through that program.  Our ophthalmologist also does clinic there once a month so that she can communicate with Caleb’s team and they can set goals and discuss what they think he sees together.  My biggest word of advice for parents of children with monocular vision is to call your local school district or early education program and see what programs they have to offer your child.  You just don’t know what you will find, your community may also have an amazing set up for the visually impaired like ours does.  I would have never known if I hadn’t called.

Success in Patching and Glasses

How do we keep glasses on a child when he sees no benefit to wearing the glasses?   I have no great answer.  Somehow, Caleb accepted the glasses pretty readily.  I think it helps that we have another glasses wearer in the family.  My best advice is to make sure you get something that is very comfy and don’t give up just keep putting them back on.  Mimicking his teacher, we always say “Glasses on!” in a cheerful voice while we put the back on.  We do the same when we patch we say “Patch on!” as we put it on. We just try to make his glasses a very positive thing. I also have little helpers who have been instructed how to put the glasses back on, so that I am not the only one doing it.

Have you ever been at a show when a person with a large hat sits in front of you and you can see the sides of the show but not the  middle?  I imagine that that is probably what Caleb sees when he is patched, but fuzzier.  Through his teacher we have discovered that his affected eye can see much better when things are contrasting.  That means for patched play time we set him on a black mat with light colored toys. When he is patched and eating we place a black colored mat on his tray and use light colored food.  We also have a safe place for Caleb while he is patched.  A place that he can play in that has been blocked off from all the other wild and  wriggly beings in our household.  These things have really helped us meet our 2 hours of patching a day.  All these tips are simple things that I would have never thought of had it not been for our early education program.

Children with monocular vision will likely grow up and lead productive and healthy lives.  It is important for me to continue to remember that as we wade through this time. I am thankful for the support I have while we do it.

when your child suddenly refuses to wear their glasses

May 26, 2010 4 comments

Karla recently posted on the facebook group that her 9 month old son Caleb had suddenly refused to wear his glasses that he’d been wearing well for quite a while.  It turns out that he had an ear infection, and after a couple of days on antibiotics, he’s back to wearing his glasses again.

baby boy in glasses

Caleb, happy in his glasses

This got me thinking about other experiences people have had with their child suddenly refusing to wear their glasses.  We tend to worry about how to get them to start wearing their glasses, that I think it’s easy to believe that once they’ve started wearing their glasses, we’re home free.  But if my experiences with Zoe are at all typical, kids love to change things up as soon as we get comfortable.

Has anyone else run into a time when their child just stopped wearing their glasses?  Did you ever figure out a cause, or work out a way to get them back into wearing their glasses?  A couple things that I can think of to check on:

  • Are the glasses adjusted correctly?  Zoe once stopped wearing her glasses when they were extremely crooked
  • Could the prescription have changed?
  • Are the lenses very scratched up?
  • Has your child been sick or have other health issues?  Karla’s story above comes to mind.

What else?

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Your stories: dealing with triplets when one of them wears glasses

May 22, 2010 4 comments

This story came in from Jennifer. -Ann Z

When I found out Bo has Accommodative Esotropia and would have to wear glasses, I was not concerned about how he would handle it.  I was concerned about how his brother and sister would handle it.  I have Triplets.  When Bo got glasses they were a little over 1.5 years old (they are currently 2.5 years old).  In August Bo will be wearing glasses for a year.  I can not even begin to count the number of frames he has had.  Just this week two pairs have been broken.  JUST THIS WEEK!  His glasses were broke over the weekend and he had an eye dr appointment on Wed.  So, I dropped his VERY broken glasses off. Since they were unfixable they had to order new frames.  Then, this morning I had to drive the hour back to the eye glass place to drop off his other pair and of course they are beyond fixable and another set of frames is being ordered.  He now wears a pair that the eye glass manager was nice enough to make us for free, but since those too are broke, they are ducktaped, holding the arm in place.  We live in a very small town and have to travel an hour one way to the eye dr and eyeglass place.

Bo, Anna, and Alex. Bo wears glasses for accommodative esotropia.

Having 3 toddlers the same age with one having something that the other 2 do not, is a major adjustment and hassle.  They have always had the same things and gotten the same things.  If one gets something, the other 2 get the same thing.  They always go everywhere together (I am a SAHM with no help and my husband does not get home until 6pm).  So, when Bo got glasses he did not want them and Anna and Alex did.  It is a constant battle.  I must ask a million times a day “where are you glasses?” and “where are Bo’s glasses?”  I will found them in a bed tangled up with sheets, or at the bottom of the basement stairs or stuffed somewhere.  MOST of the time whichever one hid or threw them will find them and bring them back to me.  BUT, times like this week I leave the room for less then 5 minutes (or even just turn my back) and I find them in pieces, looking like they have been run over by a truck.  Two pairs have ended up like that just this week.  Bo is great about putting them on and taking them off and handing them to me.  They all know his glasses is my button to push to get me upset.  If Anna or Alex get mad and Bo is anywhere near them, they sling his glasses off his face.  Anna and Alex also know this is the way to pick on Bo.  He has always been the quite one and the one to be picked on.  And taking his glasses is how they pick on him.

And then when I am told Bo will have to wear a patch an hour day my first thought was “great, stick a big sticker on his face.  Something else for the other 2 to be jealous over”.  We have tried everything from giving Anna and Alex play glasses and stickers, but nothing works.  I can’t turn my back or leave the room for a minute without worrying about his glasses.  I don’t want to have to take his glasses off everytime I leave the room.  Nor do I want to have to drag him with me.

We have been luckly enough to have found a wonderful group of people working at VisionWorks.   We had no vision insurance when Bo first got glasses.  The glasses at the eye dr were going to run about $300.  When all was said and done (taxes, warranty, special lenses, scratch resistant–yeah right!) I got 2 pairs of glasses at VisionWorks for $180.  They have been great, not making us pay for replacement frames and even ordering him an extra pair for free.  Like I said before, I can not even begin to count the number of frames we have been through.  His prescription is due to change in August and I am looking for sturdier glasses.  The ones at the eye dr can be twisted and rolled up into a ball and they bounce back in place.  My thought is to get those on the insurance and then get a replacement pair (or two) at VisionWorks.  I am very open to thoughts and suggestions on sturdier glasses!

It is an ongoing battle and I can only hope that it gets better as they get older. That one day (sooner than later) Anna and Alex will learn to leave Bo’s glasses alone and that Bo will learn not to let them take them off.  I know I have probably made my children sound like horrible monsters, but I promise they are not (only when it comes to the glasses)!


Children’s Eye Foundation photo contest

May 21, 2010 10 comments

It is time again for the Children’s Eye Foundation’s “I Care for Eyecare” photo contest.   Children’s Eye Foundation is the foundation of the American Association for Pediatric Ophthalmology and Strabismus, their aim is to ensure that all children receive proper eye care, and to encourage physicians to enter the field of pediatric ophthalmology.  Each year, they run a contest to get submissions for a calendar that they sell as a fundraiser.  Last year was the first year they asked for photos, and anyone who was reading at that time probably remembers that we tried to get as many of our little four eyes into the contest, and into the calendar (you can see the submissions from our readers here – three of those submissions ended up in the 2010 calendar).

This year’s theme is “love at first sight,” which they say could include images that “portray the love a between a baby and parent or family or the love found via a child’s first vision or life experience.”  That’s a pretty open category, and I would really encourage all of you to consider submitting a picture of your child.  I know from the photo gallery (which I desperately need to update) and from the facebook group, that we have some incredibly photogenic children and talented photographers, and I firmly believe that the calendar from the Children’s Eye Foundation should have many pictures of beautiful children who have directly benefited from great eye care.   The top 12 vote-getters will win a digital camera, and a panel of judges will choose 12 photos from the submissions to include in the 2011 calendar.

Like last year, let me know either in the comments or in an email (ann@shinypebble.com) if you’ve submitted a photo and the page and title of the photo.  I’ll post the pictures and links to vote for each of them.  Even if you don’t submit a photo, I’d love if you stopped by and voted for one or more of our photos.  At the moment, it looks like you can only vote for one photo a day.  I’ll keep this page updated and link to it from the sidebar of the blog so you can easily get to it and see new entries and vote.

This year they’ve changed some of the rules, probably for the better:

  • Entries can only receive one vote from the same person in a 24-hour period of time. If it is determined that an entry is receiving multiple votes from the same IP address within a 24-hour period of time, the entry will be subject to removal without notice.
  • People who won cameras in last year’s contest can still enter to have their photo included in the calendar, but they will not be eligible to win a camera.  People who submitted photos that were included in the calendar can still enter, and can still win.
  • Entries are subject to removal at any time without notice.
  • Each family is allowed one submission.
  • You can see the full list of rules here.
  • Voting runs until Oct. 1.

Photos submitted by Little Four Eyes readers (click on the picture to get to the voting page):

I love cupcakes!

Love my little world

Love from first sight

Mother's day kisses

Big sister love

Big sister love

Like dad, like daughter

Brotherly love - Sofie and her brother Aiden

Learning about my world and loving it

Aubrie - The love of dance

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Questions for parents of children with visual impairments

May 21, 2010 Leave a comment

I just got this request on the facebook group, and wanted to pass it along to parents of children with visual impairments (that is, children whose vision issues are non-correctable).

My name is Chloe and I am a student Social worker doing a research placement looking at children with visual impairments.

I was wondering if anyone would mind answering a few questions. The study is completely confidential and the aim is to improve social services for children with a visual impairment.

Thank you

Click the Read More link for the questions.

Read more…

When to take your child in to get their glasses adjusted

May 18, 2010 4 comments

After my last post about our latest trip to the glasses shop to get all of  Zoe’s glasses adjusted, Darlene left a comment asking for more information about my comment that Zoe’s blue glasses were leaving red marks on her nose.  She wondered if red marks were always an indication of a bad fit, and whether the marks were gone now that those frames have been adjusted.  I figured I’d write a new post, since knowing when to take Zoe’s glasses in to get them adjusted is something I still struggle with.

To answer Darlene’s questions, I turned to Danielle Cruss (who goes by Miss Danielle on her website).  She is a Master-Certified Optician, who specializes in fitting and dispensing glasses for children.  She has a website that’s chock full of great information on children’s glasses, A Child’s Eyes.  Her website is listed on my page of resources for parents, but it’s such a good website, I didn’t think it would hurt to bring it up again.

One of the pages on A Child’s Eyes focuses specifically on the importance of getting glasses to fit correctly for a child.  The last three paragraphs talk about signs that you should bring your child’s glasses in for adjustments.  Specifically, marks on the side of their faces, and marks on the backs of their ears.  Marks on the side of their faces need quick attention (adjustments or new frames) as they can indicate that the frames are interfering with your child’s normal head growth.

I also interviewed Miss Danielle a year ago, and asked her for more information about signs that you child’s glasses aren’t fitting correctly, and here’s what she said:

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. [I can absolutely validate this one!  A while back, I noticed Zoe all of a sudden stopped wearing her glasses.  Turns out they were really crooked, and really messing up her vision - Ann Z]

The full interview is here, and is also worth a read if you missed it the first time around.  Miss Danielle really shared a ton of fantastic information.  I’m a little embarrassed to admit that I’d forgotten that I’d asked her about this in the interview until I went back to re-read it tonight.

I can answer Darlene’s last question all by myself – this evening I checked Zoe’s nose after she’d worn her blue glasses all day.  There were slight indentations on her nose, but no more red marks.   Hooray!

New patches – Make your own, Elly style

May 17, 2010 10 comments

There are benefits to being awake nursing a baby at 3:00 in the morning, one of which that I have time to think by myself (well, without a chatty 3 year old)  This is the patch that I came up the other night / morning.  It is light weight, covers 98% of all light, easy to make and inexpensive.   All you need is the pattern, some craft foam, scotch tape, a needle and thread.  Would anyone be interested if I made you a tutorial?

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marathon glasses adjustment

May 16, 2010 9 comments

I should have taken Zoe in to get her glasses adjusted a long time ago.  Her blue glasses have been leaving red marks on her nose for quite a while now, but she wasn’t complaining about it.  Her red glasses have been looking crooked for almost as long, but again, she wasn’t really complaining.  Then last weekend, she refused to wear her sunglasses, which she normally loves, because they “hurt her eyes.”

Zoe's crooked glasses - they were a little high on the right side and didn't sit square on her nose. (ok, I'll admit, I mostly just wanted to post this picture because I like it)

So we finally got in on Friday with all three pairs in tow.  I know from experience that middle of the day on a weekday tends to be pretty quiet, so that’s when we went and there was only one other mother-daughter pair there (coincidentally, they were picking up the same frames as Zoe has, but in different colors.  We complimented them on their good taste).  The guy who was working laughed as I pulled glasses case after glasses case out of my purse, but he was happy to do the adjustments.  I had been a bit worried about bringing in the sunglasses, since those didn’t come from the store, but I explained that we got them elsewhere, and he was fine doing the adjustments on those as well.

Both the blue pair and the red pair were too tight, and the red pair was crooked as well.  The optician said she must have had a growth spurt.  Lesson learned:  If she’s getting red spots on her nose, we need to get her in for an adjustment.  Happily, we learned that they could be adjusted to still fit for a good long while. We’d been worried that Zoe was going to need new frames again, but we’re good with these for a while still.  The sunglasses were too loose, but they’re fitting well now, too, and Zoe wore them with no complaint the last two days.

Zoe happily told everyone she saw on Friday and Saturday about getting her glasses adjusted, and that she got stickers from the glasses shop as well.  I worry that she’ll one day put two and two together and realize that if she bends her glasses, she’ll get to go to the shop for glasses adjustments and a sticker.

The Specs Are In…

May 13, 2010 3 comments

So here she is with her new glasses.. We are totally loving her cute new look, and it’s been fun to show her off to friends and family. At the office when she put them on the Optometrist said “Look outside Birdi..” and she did. I choked up a bit. She just took it in. Then we tried some other frames on (discounted frames to have a backup pair made) and she eagerly looked around and was disappointed to see (or not see) that everything looked the same. She wasn’t able to wear them for an hour while the ear loops dried, so I put them on her as she climbed out of the car. She looked around the garage and said “It’s SO CLEAN!!” I couldn’t help but laugh. She ran around touching things saying “This is CLEAN! That is CLEAN!” and then she trotted over to the garage door which was covered in smudges and said “Whoah… that door is NOT clean!”

As the day wore on, she did want them off as they did start to bother her eyes. I gave her some tylenol and she seemed to relax after that. As of this morning she is happy as a clam. A few things I do have concerns about now that she has her sassy new specs. First of all, her pupils really seem to dialate when she is  wearing them. Why is that? Also, she has mentioned seeing a rainbow as they come off. I assume she is seeing some prisms. They go away, but is this something to be concerned about? Ah, and as I post this she has approached me with a bare face. Thus begins the phrase that will be heard a plenty in this abode….

Birdi! Where are your glasses?!

I’m Birdi’s Mom.. It’s What I Do.

May 11, 2010 5 comments

Well if I’m going to be completely honest, I’m Diane, Amy, Birdi and Frank’s mom. They are each a bit more than two years apart, and I may be one of the older 30-year-olds that I know. Birdi is not my first child to need glasses, but she’s the youngest of the crew so far, and has a very strong prescription. So here’s how our story begins.

Spring is upon us, and Birdi is enrolling in her second year of preschool. As we ready our paperwork, we realize that she is a bit overdue for her four year checkup. I make an appointment, and wrestle my 20 month old son under one arm, while holding Birdi’s little hand with my own. At the doctor’s office, she obediently and cheerfully hops on the scale, a perfect 30 pounds. Then it’s over to the wall to be measured. She’s a peanut just a hair over three feet. The nurse asks if I think she could handle the vision test, which is merely a poster with simple black and white pictures. The nurse positions Birdi and I at a predetermined distance from the wall.

“Okay Birdi, what’s this a picture of?”

Birdi fidgets, rubs her eyes and looks shyly to me.

“I don’t know.”

I press her a little…

“Birdi, you know what that is! You just had one of your own at your party not long ago.”

She continues to fidget and won’t look up. The nurse walks up to us and takes Birdi’s hand, then steps Birdi forward about 5 feet.

“A birthday cake!” yelps Birdi as the nurse points at the top picture.

Oh dear.

In the exam room, the doctor suggests we follow up at the eye care place of our choice. There is a chain place that I go to and figure that will be enough to see if she really has a need for correction, or just has a short attention span. We are actually able to get her in that same afternoon.

Now, I walked into that office with a resolve to not be “sold” glasses. I have come to question the integrity of some chains, and figured that if she only needed minor correction, we might do some homework before buying a pair of glasses that will be ready in an hour. So we step into the dim room, Birdi starts her exam. About 15-20 minutes later, the optometrists takes off his own glasses to rub his eyes and say

“I would like to send Birdi to a pediatric specialist.”

It turns out, that by his best measurements, Birdi has a prescription of  +7.5 in one eye and+7.0 in the other.  He explains that this is a very strong Rx for a kidlet, and wants someone who works very closely with children to take a better measurement. He gives me a phone number and sends us on our way.

Oh, and of course he reminds me that I am welcome to bring the Rx back and they can fill it for us. I snickered. I couldn’t help it.

So I go home a bit shell shocked. I mean, she can see right? She does sit directly in front of the TV, but what kid doesn’t? I find myself quizzing her with a black and white picture of her and Chuck E. Cheese from her birthday. I turn it sideways so that instead of side by side, she and the resin figure are alternately on the top or bottom of the picture. She’s excited about the game until she can’t see it anymore, and it should be clear as day. Suddenly things are making sense.

Birdi is pushy to be in front, and she has a short attention span. She loves to hear a bedtime story, but will fidget as soon as the book is out of her hands. What I think was happening, is that she loses interest the minute the object she is to be focusing on grows blurry.

So our next stop was the specialist. We made an appointment with the only pediatric ophthalmology office in our area. The drive is just shy of an hour, but the office was great. We were seen in a timely manner. The verdict: both eyes are around +5.5.  He informed me that though this was a pretty big prescription, it was not horrible. My biggest question of course is how she sees now. He explained it this way..

Small children have a remarkable ability to accommodate for vision shortcomings. Birdi is able to see things, but it takes a lot of work. Basically she focuses on something (say a flower) and takes in the information about it (it’s yellow with petals) and then her eyes relax again. Her brain has all the info it needs and moves on. Once she gets her glasses, though she will recognize things the way they always were, I might notice her staring, because now there is no stress when trying to take in more details. It made sense to me, and I am very eager for her to get her new specs.

The doctor decided that we would start with a Rx of +4.5 in both eyes, and see how that affected her sight over the next few months. He handed me our prescription and suggested we just use the optometry shop right there. We ordered her new glasses to the tune of over $300, and still do not have them. I called after 10 days had passed, and it turns out that her glasses had come in, but were unreasonably thick and heavy, so he sent them back to have them remade. It has now been 15 days, and I left a message today. I am frustrated and impatient, and have decided to order a backup pair from Zenioptical so that if something should happen to her “good” glasses, she won’t be without for terribly long.

There’s our story thus far. My questions are still many: How will she look? Will she really see things differently? Will she keep them on? Will her eyes look funny? Will her vision seem worse when she takes them off? Will this get better?

I look forward to sharing some pictures of her in her new specs, and I’m thankful for the opportunity to share our story.

Kim

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