Friday, March 27, 2009

Relating to a one-eyed monster, can this possibly be a good thing?

We are a huge Disney/Pixar family, the kids are big fans - especially my son. One of the movies that both kids really enjoy is Monsters, Inc. and tonight my daughter asked me to watch it with her. Ok, no arm twisting needed - its a cute movie. But, it is what she went on to say next that really "got" me. Our conversation went as follows...

Belle: Do you know that Mike has a lazy eye in this movie?
me: (pause) Oh, really?
Belle: Yeah he is wearing a patch so his lazy eye gets strong.
me: (baffled) Oh. I thought Mike only had one eye.
Belle: no, he is wearing a green band-aid patch on his other eye so you can't see it Mama!


She calls the adhesive patches "band-aid patches" which is what they look like - and she insists on decorating them or covering them up because she doesn't like the way they look..not one bit. Because they are flesh tone, they may be more discreet in terms of the patches you can get but to her they make it look like her eye has disappeared. You know, maybe I'm giving my 4 year old too much credit but I don't think I am. She has largely only had the use of one eye for gosh knows how long and now with patching we are forcing her to not use her "working" eye. So, is it any bit of a stretch at all that she relates to the one-eyed Mike? To me, not at all. And I think it is cute that she's claiming his other eye is patched! Never would I have imagined my little princess would find Mike Wazowski of all "things" relatable. The other pretty cool thing is that so many of the monsters have all sorts of different eyes - some have 1 eye, 2 eyes, 3 eyes, 9 eyes, etc. Tonight when she was watching it she was counting their eyes and then telling me all about them. I do think that I enjoyed watching it tonight more than even the first time I viewed it. Yes, Monsters, Inc. absolutely has moved up in my approval ratings, not like I didn't already enjoy it!

Children's Eye Foundation Eyecare Calendar Contest

I've been reading about the Children's Eye Foundation calendar contest over at the Little Four Eyes website. The CEF is running a contest for pictures to run in their calendar from user submitted photos and online votes. It seems that many of the submissions, while "beautiful", don't seem to be the most relevant to kids eyecare. So, members from the L4E community have been submitting beautiful pictures of children wearing glasses, patches, etc. Please take a minute to visit Little Four Eyes and check out the beautiful kids and vote - you can vote as many times as you want, so you don't have to pick just one - pick 'em all if you have a few minutes to click!
http://littlefoureyes.com/2009/03/26/childrens-eye-foundations-photo-contest/

I decided to join in and submitted one of my favorite pictures so far of Belle wearing her patch. This was actually one of the first pictures of Belle wearing the patch and she was still smiley about it. Unfortunately most of the pictures I have lately are not so happy, but regardless of the patch and squint - I still see her Smiling Eyes :)



Vote for "My Smiling Eyes" and promote Amblyopia Awareness! Princesses can and do wear eyepatches!


Patching makes her eye strong and beautiful.

Wednesday, March 25, 2009

Amblyopia at School - Developing "a plan"

When my doctor told me that my daughter would need to embark on "full time patching" including school - minus playground, gym class, dance class - I got really nervous about it. Immediately I worried about my daughter's safety at school with the patch on. Patching over her good eye was effectively leaving her with 20/200 vision not to mention impaired depth perception. Yesterday's kaboom into the outside brick wall, really drove that point home.

After seeing how my daughter was at school last week with the teacher called a meeting with me which I had on Monday morning. The participants in the meeting were me, the teacher, the school nurse and the school vice-principal. Together we came up with an "individualized health plan" for her that includes the following:

Student Goals:
  • Will be able to navigate classroom safely with impaired vision
  • Will continue to make age appropriate academic progress with impaired vision

Interventions/Accommodations:

  • Teacher & paraprofessionals will support student as needed so she is socially comfortable wearing patch and eye glasses
  • Patch will be removed by teacher or paraprofessionals for phys-ed & playground
  • Teacher will assign a buddy to navigate the classroom as needed
  • Any academic work that student is struggling with will be enlarged as needed. Non academic work will be sized as for the rest of the class to stimulate the brain to begin to utilize the left eye per treatment plan
  • Teacher and parent will communicate regarding student's frustration or non-compliance with the patch and plan accordingly (if necessary instituting a behavior/reward system)

First and foremost we addressed safety issues as well as the delicate balance between accommodating for her poor vision and also stimulating her vision. We all want to stimulate Belle's vision but not at the expense of her academics. Considering she is in preschool - her academic schedule is not the most rigorous, but she IS learning to read right now and her handwriting is super wobbly. So, we all made sure we were on the same page. I have to say the school has really been great so far in helping my daughter patch successfully at school.

Tuesday, March 24, 2009

Silly Puppets help Amblyopia Kids in Eye Patch Kids DVD

Kelly Harmsen is the mother of a child with Amblyopia who fought wearing an eye patch. She came up with the idea of making the movie, The Eye Patch Kids, to help kids with wearing their eye patch as a result of her own child's battles with wearing it. The Eye Patch Kids are silly sock puppets called Bjorts and her company is called Bjort & Company. I'm not quite sure what a Bjort is, but whatever it is my kids sure think they are funny! Still, though the puppets look crazy and hilarious the message they deliver is a serious one - wear your patches! The storyline revolves around Princess, a girl puppet, who doesn't want to wear a patch even though her friends do, and at the end she wears a very pretty glitzy one and teaches kids an "eye patch promise" to wear those patches.

We are currently amidst the "patch battle" here with Belle. She doesn't like to wear her patch - but she does love the Eye Patch Kids! In fact, both my kids really enjoy the movie and tried to make their own crazy sock puppets using trouser socks (that were on my feet at the time) after the first time they watched it. Since that initial viewing, my daughter has convinced my husband to watch it with her a few times to share it with him. He particularly got a kick out of her taking an oath with the sock puppets to wear her patch. Today when she got home from school she was giving me grief about wearing her patch and so I put the DVD on for us to watch together - she laughed and sang along with it and she forgot about her patch for the half hour or so that it played for. When the movie ended she wanted to take her patch off and I talked to her about the promise she made with Princess to wear the patch so her eye gets strong. She knows she needs to wear her patch but she doesn't like that it makes her look "different". Patching compliance is something we'll continue to work on and use this DVD to help.

The Eye Patch Kids DVD menu has the options of playing the movie, taking the eye patch promise or doing sing-alongs. You can Buy The Eye Patch Kids DVD For Amblyopia/Strabismus from Amazon or directly from Bjort & Company for $15.99



Read my epinions review here

She ran into the wall

Yes, you read that right. My daughter ran into the wall today while she had her eyepatch on. When we got to school and she ran up to get into the Pre-K lineup she ran right into the brick wall and fell down. She got right up without crying and then blamed the kid who was 2 kids over and said she pushed her! The teacher and I made sure she was OK and the child who did not push her apologized anyways and asked if she was OK - it was one of her friends! Geez. So Belle was fine and her ego was bruised but it rang home to me and the teacher just how much her vision/depth perception is off when she is patched and only has the use of her weak eye. As Belle puts it, everything looks "fluffy".
And, that wall, just jumped right out at her.

Sunday, March 22, 2009

5 steps forward, 4 steps back

Belle did wear her patch today but boy did she raise heck about it! I think it was because she spent her day at home today, so she had lots of time to stew about it. And boy, did she let her feelings be known.
  • This patch is hurting
  • This patch makes me look ugly
  • Its not very fun with this patch on

Still, my husband had her wear it for a few hours this morning and then after I got home and we "took a rest" she put it on and kept it on for a few more hours.

Tomorrow starts back to school again. I have a meeting in the AM with the school about any accomodations she may require. Hoping for a good week.

Saturday, March 21, 2009

Patching at the library!

After breakfast today I put on Belle's patch and she was one complaint after the next about it. I realized that if I had her out and about doing stuff she wouldn't be bored and stewing about it. So we went to the library where she picked a few books and played in the children's area. Belle loves the library and we are lucky to have one nearby that has an awesome kids section.

First there was little "baby" toddler who was trying to play with (practically attacking) Belle's kitty cat eye patch which got her riled up that the baby was trying to take her glasses. I explained to her the baby just thought the kitty cat was cute and that she wasn't trying to take or break her glasses. But once she got settled in and playing a Reader Rabbit game she bonded with a little boy playing on the PC next to her. On the way home she told me "that boy was a nice boy and he didn't say anything about my patch". I continue to be amazed at how cognisant she is about wearing it and how she might be perceived by the other kids.

The Patch - Book helps little girls wear eye patches


My kids love books and you know, there is usually a book written about just about everything - so one of the first things I did when I found out Belle needed to wear glasses and patch was to get her some kids books about it. I was thrilled when I found The Patch by Justina Chen Headley, a book written about a little girl who has to wear a patch. The picture of a little blonde in pigtails and a tutu with a pink eye patch made it seem as if this book was written just for Belle! (See the similarity? - My patching Ballerina)

The heroine of The Patch is Becca, a five year old who after taking a trip to the Eye Doctor needs to get glasses for her vision and wear a patch to make her lazy eye get stronger. Becca doesn't handle the news very well. She fears that everyone will think she looks stupid and renounces that Ballerinas don't wear glasses. (Boy, could I relate! My own four year old announced "I look ridiculous!" and told me that princesses couldn't wear glasses). In the book Becca's big brother lends out his favorite pirate costume and lets her wear it to school with her new pink eye patch. In an attempt to overcompensate, Becca spends the day making up all sorts of wild reasons why she is wearing the eye patch - that she is a private eye, a one-eyed monster, a pirate seeking for treasure. Becca, her eye patch, and her classmates all have a blast so that when at the end of the day her teacher asks her to share with the class why she is really wearing the patch she is able to simply share the true reason - she has amblyopia, a lazy eye.. and the patch is no big deal. In fact, it would seem some of the kids are rather envious of Becca's patch.

The book includes a brief summary in easy to understand language at the end about the eye condition Amblyopia.

When I shared The Patch with Belle she could relate to Becca immediately. We had just gone to the ophthalmologist and it allowed for a talking point between us about how Becca was feeling and how Belle felt - which was pretty much the same. She giggled while I read about Becca's wild adventures with her friends and thought it was pretty funny when she pretended to be a one-eye monster. She asked if she could pretend to be a one-eyed monster later when Daddy came home, which I said she could. She told me she didn't want to pretend to be a pirate like Becca, though ironically she was doing just that at a playdate yesterday. The icing on the cake? She asked me if she could bring this book to school with her to show her teacher and friends. Awesome!

The Patch really hit a homerun for us. The book comes in hardcover and paperback versions both priced affordably and has bright, whimsical watercolor illustrations done by Mitch Vane. Amazon has both versions in stock now and priced under $12!

You can even get a Becca or Figaro patch from Patch Pals.
Read my Review of The Patch at Epinions.com


Print out this really cool and fun The Patch Coloring Page

Friday, March 20, 2009

A sense of progress - patching gets easier day by day

Last night we had a talk about the patching and she told me that she didn't want to wear it because "She looks ridiculous". Inside I chuckled because I never imagined my 4 year old commenting about something in such an adult way, but I see her point. She went to on tell me that she didn't want to look different from all the other girls. I understand.

So, today was Belle's 2nd day of patching at school. I can say that I honestly see it is getting easier with some resistence. She went to dance class and didn't wear her glasses or patch for class. After class I changed her into her school clothes and we put on her glasses and patch and the tears started flowing. She tried to hide in one of the chairs in the waiting room. I just matter of factly took her out to the car and drove literally across the street to her school. By the time we got to the school (all of 2 minutes later) she was calmed down and she went right into class without the fuss of yesterday.

After school she headed over to a friends house and the two of them played. They played Pirates of all things - this surprised me because Belle has up until this point made it clear she does not like pirates. However, the friend she was playing with was a little boy who likes pirates and she was going along with it. He got out 2 pirate eye patches and went to hand one to Belle and she announced, "I already have a patch... Arrrrr Me Hearties!" I think I should have laughed and cried but I was in a state of jaw on the floor shock. They proceeded to do pirate dressup and have a grand old time. She wore the patch from 10:30am til 4:30pm - a total of 6 hours without complaint.

When she got home she said she was tired and I took the patch off. A bit later she suggested putting a patch on both her brother and her father and they played along. She even asked to put one back on herself for a bit.

Days are looking up.

Thursday, March 19, 2009

"I want to hide"

Today was Belle's first day of wearing the patch to preschool. I got her up as usual and set her up with her breakfast and chocolate milk while she watched kiddie TV. She asked me for her glasses so she clearly gets it that they help her see better. About 45 minutes before we needed to leave for pre-K I got out the adhesive patch and stickers and let her decorate it. She picked some jewel stickers and Cinderella - of course. She enjoyed decorating it and gave me no issues at all when she was done and I occluded her eye.

One thing is that I upped her to the Nexcare - Regular size patches since the Nexcare - Junior seemed just a touch too small on her gigantic blue eyes. She was able to release the adhesive by manipulating her face and then peek out of the edges. The Jr. size patches measure 2.44"x1.81" oval vs the Regular at 3.19"x2.19" oval. She can wear her glasses over the top of the patch, they fully occlude and they are pretty discreet looking (until she puts shocking pink sequin stickers on top of them!). A box of 20 is around $6 which isn't too bad but I can see where we'll go through a lot of these if she peels them off, has to take them off for gym/dance class, etc.

After she got the patch on and was ready for school I let her pick out the Patch Pal to go over her glasses. Ultimately I hope to just be able to use a re-usable cloth patch but she really peeks with them and they aren't fully occluding her so if she wants to wear the pretty girly patch then we have to put the adhesive one under it. She picked out the princess patch and we were on our way.

We headed to school and she was happy as a clam until I pulled into my parking space. She got out of her seat and tried to hide in the 3rd row of the minivan and said she needed the Patch Off. I said she had to keep it on and that after school we'd do something. We headed up to the "line-up" where the kids line up against the wall before all walking in together and she wouldn't get in line. She sobbed, she clung, she pitched a fit. She created such a spectacle that all the other parents at the drop-off were staring with their mouths open. Of course, I'm use to people staring at me and my kids (my son has Autism and has done some crazy stuff in public in the past, I'm over it). It didn't bug me so much as I wanted them to mind their own business. Meanwhile Belle was losing it and all the line proceeded into the school.

"I want to hide"

"I don't want this patch"


One of the classroom aides came over and took her by the hand (she was still crying and trying to hide) and walked her in. I had to do the Walk Away and not look back. It killed me, but I know it was the right thing to do.

At pickup time she came skipping out with the line and was smiling and her cheery self. The teacher reported she did just fine in school with it and kept it on. I anticipate that wearing it at school will get easier as time goes on.

Patching Ballerina?

Belle asked to watch a favorite video, Prima Princessa Presents Swan Lake. Me, being the "mean mommy", suggested that she wear her patch and watch it. She agreed but on the condition that she could also wear her tutu and leotard - no problem. Deal!

Usually when I put this video on her for her she is all smiles. But, not this time.

What we had was a very sad ballerina.
PS. In this picture above, I am pretty sure she is peeking/cheating because she is looking to the side and up, plus her head is cocked..... Busted!

Wednesday, March 18, 2009

First Time Patching: Patch Pals

I decided since she was really digging her new glasses that we could go ahead and try out the patch. The idea was novel at first and she played along surprisingly well. The cloth patch featured is from Patch Pals and is made of felt. It slips right over her frames and has a button loop that the nosepad goes through. Because it seemed to me like she could peek around it I stuck an adhesive patch beneath it. She asked me to take a picture to send it to her grandmother, so I did -and she was quite smiley.

This really seemed to be going too well for me but I just continued to smile and go with it. Since she was doing so great she asked me if she could use my laptop so I put her on the NickJr. website. I immediately noticed she was trying to cheat and try to find a way to peek around the sides, top and bottom of the patch. She got real frustrated and melted down. It wasn't one of her finer moments and I was trying really hard to not get upset. I realize now, that it was just too much. Here, she got glasses and can see great and now I'm taking that away. The doctor wanted me to patch her right away so she didn't get used to the corrected vision of the glasses and then resist further. But, a part of me thinks an adjustment period with the glasses might be what she needs?

Picking up the Princess Glasses

We picked up her Belle's pretty pink glasses and she was amazed at how much she could see. She really likes them quite a bit and immediately went and checked herself out in a mirror. She just kept looking at herself over and over and Smiling!

But, and this is a big but - she is complaining that they hurt her ears. So I wonder if they are too tight, or if she is just going to need to get used to them. They don't appear to be too tight at all. I guess if she is still complaining in a few days we can go back and get them adjusted. I think probably she is just not used to wearing "real" glasses.


Now THESE are smiling eyes!

Maggie's story.


The day she was born, I noticed her eyes were swollen shut. I asked the pediatrician who checked on my newborn infant if this was a concern, and her reply was no. Flash forward to 18 months-my daughter was exposed to Sesame Street from the time she could sit up, and now she was counting to 10. Surely she had acquired the intellectual mind of her father through hearing about the numbers, colors, shapes that Elmo and the gang promoted.

It didn't occur to me however that her standing three inches from the TV screen was a problem. I kept moving her back and telling her standing so close was not how we watched TV. It didn't occur to me that she might have severe vision problems, because my husband and I both had perfect vision. I was even told as a child to become a pilot since my vision was so good! Then, I remembered my mother telling me that she too stood close to the TV as a child, and that was a good indicator of vision problems with children.

Another tendency she had was constant frustration. When I would bend down and look at her, she often struck out at me with her hand in anger. I couldn't figure out why, but it was a definite outburst of frustration. Little did I know then why she was frustrated, she couldn't see.

We made an appointment for Maggie, my blond haired big blue eyed youngster, to see her pediatrician. It was quite obvious to her that Maggie indeed had vision issues, and we were referred to the Casey Eye Institute here in Portland.

I was very nervous for this appointment. So nervous in fact that I refused to do any research on vision problems in children through Google or the library. I did not want to prep myself for any fears that my daughter could face any sort of blindness. That first visit was difficult on Maggie, then 26 months. Trying to get a toddler to be still so a doctor can flash lights in her eyes, and get her to identify tiny pictures was a nightmare, but amazingly the P.O. was able to diagnose her anyway. When the examination was complete, she rambled off Amblyopia. She handed me the pamphlet and an eyeglass prescription. The numbers on this prescription did not make any sense to me as I had never had a need to wear glasses, nor did my husband. When I asked the doctor to clarify Maggie's condition, she gave it to me blunt; "Maggie is very farsighted, and she will most likely need glasses for the rest of her life."

Do most parents cry when their child is diagnosed with this? I don't know, but I did let the tears come. Was this my fault? Did her swollen newborn eyes have something to do with this? The real reassurance I was given was that we caught it quickly, and there is a great chance of progress when it is caught early. So, now it was time to get Maggie a cute pair of glasses and begin helping her amblyopia. The day we put on her new glasses with the prescription was a day I will never forget. As I put them on her, she looked at me with her big blue eyes and said, "I see you!". How obvious it was when her eyes actually focused on me, and how much different the world looked to her.

Three months later, the P.O. told us to start patching the weak eye. That went on for 4 months, but showed little progress, as our feisty toddler kept tearing them off. Then, surgery was suggested to correct the weak eye's muscle. The thought of one's child on the operating table is a nightmare for any parent, and with that, I decided it was time for a second opinion. This time, I searched for a doctor who had no major interests in a giant hospital, one who was independent, but had been a P.O. for a long time.

We found a great clinic close by our home, made the initial visit, and of course on the forefront was Maggie's real need for surgery. The doctor said she did not need surgery as it would only be for cosmetic purposes, and that her eyes are still growing and changing. What a relief this was to know, that this doctor gave me the truth! Of course every child is different with this situation, but if the first doctor recommends surgery get a second opinion!

The other problem I shared with the doctor was Maggie constantly tore off her eye patch, and they are not cheap! That is when the doctor pulled open her drawer, and cut a small oval patch from contact paper and placed on the inside of her lens. This is the perfect solution for kids who peel off the patch, and it does not irritate the skin!

After 8 months of patching, Maggie's last doctor appointment on March 4th revealed that she no longer needed patching at all. In the last 18 months of dealing with her amblyopia, we have gone through 4 pairs of glasses, managed to patch almost every day, and avoided surgery. Her amblyopic eye has shown significant improvement. She has become accustomed to wearing glasses, although she does have the non-breakable plastic lenses with the elastic strap around the back (at least for now).

She sees the P.O. in June for a checkup, which will be a regular occurrence throughout her childhood. I think about the day she was diagnosed, but no longer am sad. I am grateful that we caught it early on.

Tuesday, March 17, 2009

Glasses and Patches for her Dolls

She's out of control!

Seriously, my daughter knows how to work me. Earlier today I took her to Build-A-Bear where she made a bear with glasses. So, tonight she was playing with her baby dolls and she tells me she needs dolls with glasses. Of course, how can I say no to this?

In the meantime, I suggested she go play with Mr. & Mrs. Potato-Head if she wanted to play with a toy that had glasses. Then we couldn't find the glasses (since my son is always taking them to put on his Webkinz!). Life is pretty exciting at my house.

So, I start googling for dolls with glasses. I found quite a few options:

Lakeshore Learning: Item LC1147 for $9.95 you get 2 hearing aids and 2 pair of glasses for dolls. The dolls these are designed for come in all ethnicities and cost $36.95

Beyond Play
: Ragdoll type special needs dolls priced at $20 and a 2 pack of glasses (dark and clear) for $5.95. If you really like a ragdoll type of doll you may be interested in the Dexter dolls which come in a boy/girl pair for $20. At the time of me publishing this, Costco has them: http://www.costco.com/Browse/Product.aspx?Prodid=11311255

Glasses for 18" dolls - like the American Girl, or other "knock-offs" - my daughter has one of the Madame Alexander Girlz dolls that she loves. Lots of doll collector sites sell them and one of my friends told me that you can also buy them at craft stores like ACMoore or Michaels very inexpensively. This website has a huge selection in just about every color and style and they are only $3.50 a pair! I am going to check out the craft stores but I have a feeling I will be back here. http://www.dollclothesstore.com/Doll_Accessories/Glasses.htm

American Girl - I knew these would cost a bit more and they do. Still, just $8 and you can have "real" American Girl brand doll glasses, they even come with a cute little case and in a range of colors from neutral to metal or bright colors.

Build a Bear glasses & sunglasses accessory - Just $4 a pair. We have the tortoise shell ones on my daughter's bear.


Looking for Patches for dolls?
Coordinate a doll/bear patch with a patch for your child from Pumpkin Patch Eyeworks The patches are designed for 18" dolls and they even stock the little eye glasses for dolls here too.
http://stores.lazyeyepatches.com/Categories.bok?category=Eye+Patches%3APatches+for+18%22+Dolls%2FStuffed+Animals

OrtoPad the maker of kids adhesive patches also sells Bears with patches. It comes in a girl or boy version and is called OrtoBears and they are $15 a piece.

Also, FrameHuggers has a Patching Pal program that sells a stuffed animal that is dressed and wearing a patch plus a reward incentive program. Its $34.99 to "enroll". We are huge fans of the FrameHuggers patches (read our review) here.

Little Patching Buddies from Anissa's Fun Patches offers cuddly ragdolls that wear glasses and patches. 

First time with Eye Patch

So, this afternoon after we got home I introduced the eye patch to her eye. We've been talking about them and she is resistant but today she agreed and even told our P.O. she was going to wear it. Since she doesn't have the glasses yet to wear her Patch Pals patches, we tried out these disposable ones [Nexcare Adhesive Patch (Jr. Size)]. I thought it would help to let her put some stickers on it to decorate it. Of course she picked Cinderella and also a girly heart sticker. She had fun decorating it and let me put it on without any problem.

Within 5 seconds she was trying to pull it off and yelling "I want 2 eyes. I cannot see!". Her vision in her weak eye is 20/200 which is very blurry and the fact that she had Atropine drops in from her exam made it even blurrier I'm sure. She ripped the patch off within minutes.


We tried again later and had the same reaction.

I got out the package that I received from Patch Pals and showed her the cloth patches and we slid them over a pair of her sunglasses to show her how they worked. She likes the hot pink Princess patches the best. I'm not surprised.

Tomorrow, Wednesday, is picture day at school so I made the decision to start her patching at school on Thursday. This way she'll have her new glasses already too.

Any tips on patching, appreciated!

Build a Bear with glasses

Meet Flowers, Belle's Bear that wears pretty glasses!

After we picked out Belle's new frames we headed over to the mall for a slice of pizza and some shopping. She asked me if she could go to Build A Bear and I suggested maybe getting a pair of glasses for one of her many "pets" she has at home. Of course, that ended up turning into building a new bear that wore glasses, but that's ok. Isn't she PRETTY?
BuildABear sells little glasses for your plush animals for just $4. My son has a build a bear dog that has glasses, so I know this is where she got the idea. We went there one day while his glasses were being made to kill time. Of course, anything that he gets she has to get also - that's how it works when you are a little sister.





This is where she gets the idea, her brother. That is one pet wearing a much loved pair of Mr. Potato-Head glasses and another pup wearing Alex's prescription sunglasses.


Picking out Princess Glasses

At the recommendation of 2 of my dear friends who have daughters with glasses, we went to Pearl Vision where they carry the Disney glasses and have a good selection for girls. The pretty girl working there, who was wearing bling bling glasses, pulled out the frames that she thought would be a good fit for Belle and we went from there.


From the moment she put this pair on - they were the ones. I was kind of trying to steer her to a pair of the titaniums flex-on type but she insisted those were for boys (which is because her brother wears that kind). Really, I should know better than to make suggestions because she has quite a mind of her own and speaks it. I liked a light pink pair, but she vetoed me.

We pick her new glasses up tomorrow afternoon!


The Princess chose these! Disney Princess Snow White #2

Now, here is a princess in glasses!

Results of our Eye Doctor visit

As previously diagnosed, Belle has anisometropic amblyopia. Her "good" eye, the right one was measured at 20/60 after the refraction test and the left eye is 20/200.

What is anisometropia? It is when the 2 eyes have very unequal refraction - in Belles case both eyes are farsighted but the prescription is both eyes is quite different. It is estimated that 6% of those between the ages of 6 and 18 have anisometropia

What is amblyopia? This is "lazy eye" - her brain has suppressed the vision in her weaker eye and she is relying on her good eye to do all the work. This condition is estimated to affect 1–5% of the population.


Treatment:
Belle needs glasses, obviously, to help her see better. In addition to the glasses we also need to restore her vision as best as we can in her weak eye. We discussed Patching vs Atropine drops and the pros and cons. The doctor and I agree that we are going to use Patching because of the side effects of the Atropine (flushed face, sweating, non-stop dilation of the eye, light sensitivity). The patch needs to be on her better eye - the right eye pretty much full time. He said she should have it off for gym class and when she goes to dance class and if she was just chilling out at home she could take it off in the evenings too.

We go back to the eye doctor in a month, April 14th.

Visiting the Ophthalmologist is Fun

Off we went to the ophthalmologist for Belle's visit. Her eyes were really dilated and she was complaining that everything was too bright. I had her wear a pair of her sunglasses which she kept on for the entire car ride and all the way into the office. She went right in and followed all the instructions from the nurse. When we got into our exam room she went right over to "the big chair" and sat in all by herself this time. Last visit, she had to sit in my lap and was a bit fearful of the big chair.





This time there was no fear at all. I loved the confidence and bravery she was exuding. She lit up the entire office. She giggled as they took her for a "ride" to lift the chair up higher so she could see the charts.







Belle likes the puppy that they have set up across the room and insisted on saying hello to the pup and petting it. She introduced the puppy to "little happy" her plush kitty that she likes to snuggle with. Little Happy went to the eye doctor with Belle to keep her company and help her not be afraid.







They showed Belle how the puppy worked and let her try out the foot pedal to make the puppy bark and wiggle. All the people in the office were thoroughly entertained by Belle and the puppy.

Atropine Drops causing Droopy Eye?

The 2nd dose of drops went in pretty seamlessly. I had her lay on the couch on her princess pillow and just dropped them in. She wasn't giggling this time but she was shutting her eyes and saying they are hard to open. She keeps pointing to the left eye - which is her "bad" eye - the 20/200 one and saying it isn't working. I notice in the picture also that it is noticably droopy.






Examination Morning - Atropine Dose 2

This morning Belle was a little sweaty when I picked her up out of her bed. She isn't my sweaty kid (that's her big brother) so I was surprised by this. Granted, she'd picked out princess flannels so the hot pajamas probably didn't help it. Her cheeks were still slightly rosy but she wasn't real flushed nor was her breathing labored at all. Her eyes were still full moon dilated as they were the night before.

After getting her dressed she told me that the light was out in the living room. It didn't need to be on because of the sunlight but she sometimes likes to turn it on in the morning - a bit of a 'routine' child. When I turned the light on she cringed and tried to shield her face - screaming that it was too bright. It was somewhat like a scene from vampire movie where they are exposed to the light of day (obvious non-Twilight type!). I used the dimmer switch to lower it and then ultimately just turned it off. Unlike usual mornings where she gets up and will have her breakfast and watch her "shows" in a sunny mood, today she is laying on the couch in a fetal position and generally acting quiet. My little princess isn't feeling all that hot - but she sure does look fabulous and "ready" for St. Patrick's Day! (sore spot, I shouldn't have scheduled her appointment on St Paddy's day - apparently her class is having a party and she is not happy to be missing out).
We'll be heading out to the doctor shortly.



Monday, March 16, 2009

Atropine Drops Picture - Got dilation?

Photo taken 1 hour post atropine drops. Her pupils are the size of saucers you can barely see the baby blues. The apples of her cheeks are slightly flushed, as if she got into my make-up case and dabbled.

First dose of Atropine in!

Well, it went way better than anticipated getting the drops in. But, like I shared earlier - we recently dealt with pink eye, so she's no stranger to eye drops. I announced I was getting the eye drops and she followed me into the kitchen to get them. Then she laid on my lap in the living room and I put a drop in each eye. The hardest part was she was giggling and shutting her eyes but it wasn't a fight at all. When I finished she asked for more. Only my kid would enjoy eye drops.... Now, how long til her world goes blurry?

Hopefully she's sound asleep by then.

Atropine Drops Day

In preparation for my daughter's eye appointment tomorrow we need to give her Atropine 1% drops in her eyes tonight and then again in the morning before the appointment. I went to the pharmacy today and filled the prescription, which was only $4.20 (co-pay) - good thing. I was fearing that the drops would be like the Pink Eye drops which were like $40 for a teeny tiny vial that ends up mostly not going in the kids eye. Since she has had pink eye and eye drops I think it will probably not be too much of an ordeal to put the drops in. But, you never know with Belle. She is filled with drama - so...

Before I put the drops in I had a few questions and started looking them up. Just what are these Atropine drops anyways.

1) Are these going to hurt/sting?
Google says Yes. Side effects include burning, itching, stinging.

2) Is she still going to be able to see with these in?
Google says not really, the point of the drops is that they cause the eye muscles to relax (therefore dilating the pupil) and blurring vision. If they suggest that an adult shouldn't drive with these in.. well, you get my drift. Vision is decreased. Atropine is also used as an alternative to patching in many amblyopia cases - the drops are applied to the good eye to blur the vision in it so that they have to work hard with the other eye. Ref: Patching vs Drops

3) Will she need to wear sunglasses tomorrow for brightness sensitivity?
Google says it isn't the world's worst idea. A side effect of atropine drops is sensitivity to sunlight.

Info about Atropine Drops from Drugs.com

Now, I understand these drops are required for the Eye doc to get a good look and see the 'big picture' about my daughter's eyes. But of course I am nervous. The warning on these drops reads: Atropine Drops should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed . Also, the doctor said to me that I should put the drops in at night before she goes to bed and then again in the morning before her appointment. Her appointment is at 10:15am. He also told me that if when she wakes up she is flushed, red cheeked or having trouble breathing to not give her the 2nd dose of the drops. When I asked the doctor questions about this he answered me but I still feel nervous. Of course, I googled. Thankfully, I found I wasn't alone. A post on a Prevent Blindness Forum with a parent going through almost the exact scenario - atropine for an eye test the night before and worries about the side effect of panting/redness, etc.

The response that put me at rest:

For many years atropine has been considered the "gold standard" for refraction. There is no doubt it gives you better paralysis of focusing so that you can find the most farsightedness possible when prescribing glasses for crossing. Cyclopentolate is used by most people now but it is not quite as good as atropine. It is much more easier to use since it takes much less time to work. If you want to be 100% certain that you have corrected all possible farsightedness, atropine is clearly better. The redness and flushing that can occur with atropine is not an allergic reaction. It is a systemic side-effect. In most people it is mild, it others it can lead to sweating and a change in mental status that requires treatmnet. This is rare.

Patching Out and Meds In?

I just read another article about Patching vs Atropine drops for treatment of Amblyopia. Since today we are dosing with Atropine drops for a refraction exam, the topic is high on my mind. My daughter is headed down a journey of patching as recommended by our ophthalmologist.

This one, titled: Patching has become old school

So...if Patching is so old school. How come is it that the doctors and folks I consulted with about my daughter's eye condition all said patching was the way to go? Our PO's stance is that the atropine route is suitable for less severe conditions of amblyopia or in the cases where parents were meeting with utmost resistence in compliance with patching. We are seeing a well respected dr. in the area, and one that comes with a lot of kudos. I'm wondering though after reading study after study that maybe he is "dated" in the treatment? On one hand I feel the drops could 'save' her from teasing or the 'stigma' of wearing a patch. On the other hand I'm not one to just jump to meds as a solution - especially not knowing the long term impact that they could have on her vision.

So, I want to know...

Which worked for you?
Patching or Atropine?
Both?
Your thoughts?

Related links:
Patching vs Atropine to Treat Amblyopia in Children Aged 7 to 12 Years
Patching vs Atropine: Which Is the Better Treatment for Pediatric Amblyopia?
Patching Has become Old School
Patching vs atropine to treat amblyopia in children aged 7 to 12 years: a randomized trial.
Patching vs Atropine Drops

Saturday, March 14, 2009

The Eye Patch Kids DVD helps kids with Amblyopia

I've been doing my homework trying to find aids and supports for my daughter to help her with patching. She is OK with the idea of wearing glasses but insists that "patches are for pirates". I was impressed when I found The Eye Patch Kids DVD and have a copy of it headed our way.

You can Purchase the Eye Patch Kids DVD from Amazon or directly from Bjort & Company for $15.99

Learn more about the DVD:
Youtube video: http://www.youtube.com/watch?v=FRxp1o6pNUc




Visit the Bjort & Company website:
http://www.bjortandcompany.com/

Check out the Amblyopia (Lazy Eye) Strabismus in Children blog:
http://eyepatchingandamblyopia-bjort.blogspot.com/

Their cafepress store sells T-Shirts & Accessories for Amblyopia as well as food allergies. I particularly liked that they have products here for both of my children since my son is on a gluten & casein free diet (read more about it at the Bon Bon Gazette blog) :
http://www.cafepress.com/bjortandcompany

Some of the phrases that I liked on the shirts are:
Have you ever seen a princess in glasses before? Well here I am!
Am I beautiful with my eye patch on, or what?
Princess in Glasses
Eye Heart my glasses
I'm a patching princess!
Look forward to my review of the Eye Patch Kids DVD coming soon!

Friday, March 13, 2009

Mom Bloggers Club Support Group for children with vision issues

Join me on the Mom Bloggers Club called Smiling Eyes for moms of all children with glasses, low vision, blindness, vision disorders, patches to find support.

To join the group go to: http://www.mombloggersclub.com/group/smilingeyes

My Twitter Ids are AmblyopiaKids and Hellokittiemama

Find support on TwitterMoms: Smiling Eyes Group

Join me on the Twitter Moms group called Smiling Eyes for moms of all children with glasses, low vision, blindness, vision disorders, patches to find support.

To join the group go to: http://www.twittermoms.com/group/smilingeyes

My Twitter Ids are AmblyopiaKids and Hellokittiemama

Thursday, March 12, 2009

Coloring Pages for Kids with Glasses

Just Added:  From the Children's Eye Foundation Amblyopia Kit:

The Great Glasses Play Day -   Print out  Coloring Pages for a fun Glasses Themed Playdate!

COLORING Pages for Kids with Glasses and/or eye patches!


I found the most perfect coloring page today that is a picture of a little girl with pigtails wearing glasses and was drawn with very thick outlines. Belle loves to color (scribble) and isn't anyplace close to sticking within the lines but I wonder how much of that is developmental and how much is because of her ambylopia - I'm sure it is both. I can't wait to share this coloring page with her of this adorable and happy little girl wearing glasses.  Find the coloring page here.


I've heard that coloring is a super activity for her to do while patching and we'll get started with Amomofelly's adorable page.  From Amomofelly of LittleFourEyes.com
The lines are thicker than traditional coloring pages, especially to help those kids who are patching and are still struggling to see through their weaker eye.  More coloring pages from the LFE site here:

While I was at it I found a few more coloring pages that are appropriate from LowVisionKids.com that are pages from the book All Children Have Different Eyes: Learn to Play and Make Friends....Starring Tommy with Nystagmus (wobbly eyes) and Wendy with Strabismus (crossed eyes)


PatchPals PatchLand has posted a Princess Daisy Coloring sheet of a princess wearing a patch and glasses

The Patch   is one of my daughter's favorite Amblyopia books is  - you can print out The Patch Coloring Page

Find Printable Coloring Pages and Paper Dolls from the makers of Peeps Eyewear here - they have a princess and dragon theme. 

Also based on favorite books:  Want to make some fun eyewear just like Princess Peepers wears?
Just click here for the eyewear pattern: Fun Eyewear! Next, have a parent print it out on colored or white cardstock. Color and decorate with crystals, jewels, feathers, whatever you want! Cut them out and glue the eyewear arms or staple them. Put them on! Oh, magic mirrors! You look FABULOUS!

Find a Randy Kazandy Coloring page here based on the book:
Randy Kazandy, Where Are Your Glasses? By Rhonda Fischer, Art By Kim Sponaugle

More Coloring Pages for Amblyopia from Opticlude:

Here's fun eyeglass coloring and cut-out craft from Crayola

Wednesday, March 11, 2009

Is there a link between Autism and Amblyopia?

As I researched more and more about Amblyopia one of the facts that stood out to me right away is that it is a neurological disorder moreso than a vision/eye issue. Children aren't born with a lazy eye, it develops.

Immediately I wondered if there is any link between Amblyopia and Autism, because my son is on the autism spectrum.

Heading to the University of Google I found several links and facts of interest.
  • In a 1999 study by Dr. Melvin Kaplan, 17 of 34 children with autism had a strabismus.
Autism, Strabismus and Amblyopia (Lazy Eye)
Vision Problems associated with Autism Spectrum Disorders
Developmental Delay Resources: Strabismus and Amblyopia


Read more about our adventures with autism, the gluten & casein free diet, and more at my blog The Bon Bon Gazette.

Picking a Patch

In preparation for patching my daughter's right eye I have been searching online and looking at the wide variety of patches that are available. One tidbit of advice that I was given is that the adhesive patches can be uncomfortable and the adhesive can irritate the skin. Since my daughter's pale skin is very sensitive and she can't even wear a band-aid for more than an hour or so without it breaking out into a rash I anticipate that the adhesive ones will prove challenging for us.

A friend of mine who has dealt with patching 2 of her girls turned me onto PatchPals because her daughter liked the pink pirate ones (with skulls) - very fun. My daughter, on the other hand - detests pirates and has already expressed she doesn't want to wear a patch because that is for pirates and for boys. I showed her the patch pals and she and I picked out a couple of patches including one that looks like a cute little kitten. They have a patch for just about every occasion, color, and "look" including ones for holidays and seasons. Most of the individual patches are $8-10 or you can purchase bundles or "packs" that include several patches or patches with shirts, capes, etc. I picked out the Princess Pack which includes a pink princess T-shirt that with a glittery crown on it that says Patch Princess and Patching makes my eye strong and beautiful, Princess patches and and an awareness bracelet. I received a shipping notice within an hour of placing my order and look forward to receiving them. The Patch Pals website also offers the Patch Pals club for kids, Patchland - a virtual world to explore, a Patch Princess area and more.


Check out PatchPals.com

Afraid of the Dark

My daughter is painfully afraid of the dark. She is almost paralyzed when the lights are out because she says she cannot see. Having functional vision in just her right eye, I'm certain plays a role. She has a Hello Kitty clock radio in her room that has a built in hello kitty nightlight on it but it doesn't add quite enough ambient light in her room to make much of a difference. To help her I purchased her the Mobi Tykelight, Jr in Pink (of course). It comes in green, blue, or pink and is under $10! While I was at it I got my autistic son the green one because he loves light up toys.

So far Belle loves her Tykelight, Jr. It runs on 3AAA batteries that are included with purchase and has 3 settings auto, low, and high. In auto mode it will turn off on its own after 15 minutes. I'm hopeful that it will be her little buddy at night making things just a bit easier for her and soothing her fears of darkness.

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Tuesday, March 10, 2009

"I should have known"

When the paper came home from school that my daughter had failed the vision test, I just thought she must have bad eyes like the rest of the family (we need glasses for distance). But when the doctor told us about her amblyopia it all started making "sense" to me.

The first thing I wanted to know was how come this took so long to diagnose in her (she is 4). Many of my friends had children who started wearing glasses around 2 years old with similar conditions. Well, first of all there was no outward visible signs like a floating or crossing eye. On top of that, her right eye (the "good" eye) is near perfect sighted. So, she has been always using that eye and meanwhile the left eye has faltered and she has about 20/200 on that side.

But, looking back I've started to have lightbulbs turn on all over the place. I feel like I should have known. I was busy barking down a tree that she might have some kind of Autism Spectrum Disorder or Sensory Processing issue because her brother is autistic.

First, when she was born the pediatrician noted that she had a very slight Infant Torticollus- cocking her head to one side. But she also had some other asymmetry including one leg slightly shorter than the other - who is completely symmetric, anyhow? My step-mother-in-law and I also noted that she had one eye that seemed to go inward a bit but by the time she was a few weeks old that stopped. I didn't think of it ever again.

And then, there is the fact that my daughter is a huge clutz - I always figured she got that from me. Well, she tends to run into things and bonk her head a whole lot. Kids do that though - especially active kids who don't pay attention. I did wonder about her balance and I had her ears screened and that came back fine.

So just a week or so ago before we got the diagnosis I was on vacation with my daughter in Disney with her grandmother. We were discussing how she is such a fearful child. She is deathly afraid of the dark and is almost paralyzed by it if you leave her in a dark room. Its been a huge issue with her sleeping in a big girl bed - even with nightlights. When other kids were happy going on ponyrides, boardwalk rides and carousels she would not. She has since gotten over some of the ride phobia but is very selective about it. I had her evaluated by an occupational therapist that I knew at the school and they said there were little to no concerns that weren't age appropriate. Diagnosis: Clingy little girl.

As it turns out all of the above issues could very well and most likely be rooted to my daughter's amblyopia. The falling, running into things, fear of the dark, uncertainty about the rides -- well, she has very poor depth perception and very bad night vision - it all makes sense now.

I feel like I should have known.

"Boys can wear glasses but girls can't"

Despite the fact that I wear glasses and have since I was in the 3rd or 4th grade - I didn't want my baby girl to wear glasses. It makes me realize how much of a double standard I hold, but also society does about glasses.

My son has glasses. He looks adorable in them, and when he got them I was very excited for him. My concerns ranged in the areas of making sure he didn't lose them or break them - both of which he has done but we've replaced them and have many spares. We've also become big fans of the the flex-on titanium frames. .

So, how come it is that when my daughter needed glasses I was so upset? Why is it that when boys wear glasses they are "smart" looking but its not the same for girls. When I told my daughter she needed glasses she said "princesses don't wear glasses". Why not?

I googled "princesses in glasses" and guess where I landed time and again. More blogs of moms of princesses upset about glasses. Its good to know that I'm not alone but it screams that these kids need a role model - a princess in glasses - one of the Disney variety would be super.

An Open Letter to Disney
Princesses DON'T wear glasses
Princesses don't wear glasses
I can't be a princess

Monday, March 9, 2009

My Princess


How it began

This post was originally posted on my blog The Bon Bon Gazette:


Princesses don't wear glasses
Bad vision and a host of eye issues haunt my family. I have had glasses since about the 3rd grade. I do have contacts but my eyes are very sensitive and I prefer glasses. My husband, on the other hand - has had glasses since he was a little kid (7ish) and prefers contacts. Alex got glasses (and lost them, broke them, etc) when he was seven. With him we knew he needed them because he was squinting a lot. At first we weren't quite sure if it was a sensory thing (the squinting) but it soon became quite clear he needed them.

So, when the pink slip came home from my daughter's preschool the other day - I wasn't totally surprised about it. She failed the vision test, of abominable proportions. That doesn't mean it made it any easier to stomach. Being the girly girly girly girl that Belle is I could see right away that this was going to be a slippery slope. Although, at one point many months ago she asked for "clear glasses" like everyone else had in the family instead of her gazillion sunglasses. So, I thought - this could be OK. Still I cried. My little girl would need glasses. We'd have to put glasses on her pretty little perfect face over those beautiful blue eyes. And then I cried some more, because I wondered how long she'd been struggling with her vision and we didn't know. The doctors didn't even pick it up at her well visit - and our pedi is married to an eye doctor even! Still, a part of me wanted to doubt the school eye test result and hoped it was incorrect (even though I knew it probably wasn't).

I made an emergency appointment for the eye doctor and began to prep Belle that she'd probably need glasses. My friends who have little girls with glasses sent me all their smiliest and most fabulous pictures of their daughters wearing glasses, even some in princess dresses. As my luck would have it, another little girl in Belle's class came in with eye glasses to school. This would make 3 or 4 kids now in the class with glasses but before that the only little girl who had glasses is "not her favorite" - she is a little girl who spits, and Belle doesn't care for her (she also called Belle names at one point). And off we went to the eye doctor on Friday - many tears ensued before we got there. She was very afraid but once we got there she calmed down and was perfectly behaved without one tear.

And then they did the testing. The results from the school were confirmed. But, it was far worse than I imagined or prepped her for. Not only does my little girl need glasses, she has anisometropic amblyopia. What this means is that she has one eye with good vision and the other is in the 20/200 range. She isn't using the bad eye at all, but she does track with it which is a good sign. I saw for myself that she struggled even to make out the largest picture on the picture chart (a hand) using her left eye while the right eye was fine and down to the 20/40 range. She is going to require the use of glasses, eyepatches and drops - maybe even surgery. They are going to be doing more testing on March 17th and planning out the course of action. Before we go I need to use Atropine drops in her eyes to 'paralyze' or freeze her eye muscles. I feel so bad for Belle right now but am trying to keep on a happy face.

Monday, March 2, 2009

Kids Stuff

Fun Resources for Kids

  • Super Specs Eyeglass program - Kid just got glasses? Check this amazing resource from Prevent Blindness out with games, coloring sheets, a free tip sheet for parents and more.
  • Play Online with:

Free vision games - Eye Can Learn
Low Vision Kids Fun Stuff
Memory Game using Eye Patches - Download
Opticlude Patching Games
Nick Jr Printables & More
Patch Land
Patch Princess
Randy Kazandy Coloring Pages & Games
Coloring Pages for Kids with Glasses & Patches .

More Coloring Pages for Patching Kids & Amblyopia (from Dr. Patch)

Parents can order this Activity Booklet for Patching - Anissa's Fun Patches - my daughter loved it!
Princess Peepers craft activity - cut out and decorate this glasses pattern and make your own Peepers. Learn more about Princess Peepers and find  more Peepers fun on Pam Calvert's website 



    Parent Resources


    Amblyopia Resources on Facebook

    Amblyopia Kids is on facebook and there are lots of other great amblyopia resources on Facebook too!

    While you are on facebook be sure to check out...

    Amblyopia Support Support page for Amblyopia courtesy of Billy's Journey with Amblyopia Blog
    Amblyopia FB Community Page (wikipedia)
    Bjort & Company creators of The Eye Patch Kids DVD
    Little Four Eyes - a group for parents of young kids in glasses
    Our Road with Amblyopia
    Parents of Kids with Amblyopia (Lazy Eye)
    Pediatric Esotropia/ Exotropia/ Strabismus/ Amblyopia/ Cross-eyed Awareness
    Eye-Doodle Eye Patch Stickers Fun stickers & designs shaped like patches.
    Krafty Eye Patches - Fun Eye Patch kits for kids
    Patch-Me-Too - handmade patches for kids

    Missing a facebook link here? Leave a comment!

    Amblyopia Kids

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    Don't see a resource you want listed here? Please email me at amblyopiakids at gmail dot com