little four eyes

The chunky funky frames are a slightly higher prescription that we are trying to see if filling her whole script will help reduce the squinting.  Her left eye is looking straighter without having the muscles moved and her right eye is still healing!  The new muscle position is also helping with her academics.  The progress she has made with reading and writing in the last 3 weeks is amazing!!!!

It’s been some time since I last posted an update regarding my son Nicholas and his experiences with glasses and patching.  N has ectopia lentis, a congenital condition that causes a laxity in the fibers that hold his lenses in place, as a result the lenses can move, or dislocate, from their proper position.  This has led to a high degree of myopia as well as anisometropia.  Anyhoo..after several years of success with patching to maintain vision to the best possible, we learned a several weeks back that the lens of his left eye has moved to a position where it is no longer providing useful vision.  (He’s -8.5 R and -23L.  Lately we’ve not been able to gain acuity beyond 20/200 L)

So..we’re gonna have it replaced.   Huh? 

I always thought such things carried a lifetime warrantee.  Such is not the case it seems.  Surgery is tomorrow. The surgeon will work to secure the supporting apparatus of the inner eye and hopefully implant an IOL “in the bag”, complex terminology for “right where it needs to be”.  Otherwise, suspend the new lens in the place where the bag used to be, if things go differently.  A new frontier for us to say the least.

I’ve written infrequently, but visit this site often, sharing and leveraging the collective experience of this community.  Hoping those who may have had experience with surgery could share some tidbits of advice.  What’s the post surgical period like? Luck with maintaing the protective cover in place? etc.  Will see you on the flip side and let you know how it went. (personally..hoping he gets the one with the bionic sound effect…) 

For all you parents who lovingly patch your little ones.  Make these, give them away, but just don’t sell them!  These are inexpensive, light weight, covering, re-usable, and have a smooth texture.  They can be personalized to fit your child’s personality and the shape of their glasses. The idea came to me late one night from trying all the patches on the market and they have worked well for Elly and hopefully may work for you.  It was designed for those of you in Miraflex in mind – hopefully it will work!  It can and should be adapted to best fit your child’s needs and glasses.  I can make each patch in less than 3 minutes and could make at least 50 of them for less than $5.00.  If you can tie a knot and push a needle back and forth, you can make these!

Materials

craft foam, needle, thread, scissors, knife, tape, and the pattern

The following tutorial will demonstrate how to make a right left eye patch.

1. First cut out your foam pieces, add any extra fun pieces that you may want.  Remember, the more you add, the heavier your patch will be.  Linked here (Patch Pattern) is a pdf pattern of the main patch pieces.

2.  Assemble the pieces and hold them together with your fingers to make sure you are making your patch go the right way.  Sew your embellishments on to the rectangular section first.

3. Then, using a simple knot and a straight stitch, attach the rectangular piece to the main patch on the bottom.

4.  Fold the V in until the edges are touching and stitch through all 3 layers; top, front, and over the glasses pieces. (see, your stitches don’t have to be pretty!)

5.  Then place a square piece of tape on the triangular side.  This is to make the opening where the temples go through just a little sturdier.

6.  Using a knife or other sharp object, make a hole large enough for the temples to fit through.

And you are done =)    Well, with the patch part… here is how they go on the glasses.  I told Elliana that it was my job to put them on and off for the safety of the glasses.  These patches will fit snugly and I put them on slowly.  I made 2 patches and they each lasted me over a month when put on by a parent.

First slide the temples in between the main patch and the rectangular piece.  If you have cables, making sure the ends get in the smaller hole is a little tricky.  Those with Miraflex, I think you can take the band off.  If not, e-mail me and I will think of something.

Then pull through until the patch sits comfortably on the glasses.  I trimmed with my scissors around the nose piece so the patch sits inside of the plastic and a bit from the top so it rests comfortably on their forehead (thats why it is easier to make the pattern bigger and cut to fit).  If you have the regular nosepiece, then you could make a vertical slit for the nosepiece to fit into

.

Last and not least, have your child try their glasses with the patch on.  Make sure it is not rubbing or irritating, trim with a scizzors to make it a perfect patch for your child.

Almost forgot… we learned the hard way… DON”T use red or dark pink like my pictures.  When they sweat the color comes off and turns the skin pink.  I would use light pink, blue, white, yellow and other light colors.  If you do make a patch, please send me a picture to post.  I have a couple more that we have been using daily – pictures of them to come later!

There have been some questions lately on how my 3 year old daughter, Elliana, is doing 2 months after her surgery. I have been meaning to post an update and just haven’t had the chance.

My daughter is just one of many kids who have Lateral Rectus Eye Muscle Surgery and each child reacts differently.  Please remember that I am not an expert, just a loving parent, so this is by no means medical advice or how other children may react.

Our Ophthalmologist said that she appears to be adjusting harder than most and is struggling a bit.  I also just had a new baby (he is 3 months old) so the last 3 months have really rocked my daughters’ world.  She is now down to waking up with nightmares only 1 or 2 times every night and is having less bathroom accidents (Se was potty trained for a whole year prior to surgery)  Thankfully, her light sensitivity seems to have disappeared.  We have also started giving her temple massages, which seem to help relax her.

My biggest worry for recovery is that we would have to go in again for surgery.  We were told that 10% of our PO’s patients need to go in for “touch ups,” as the surgery is based on measurements, but each child’s eyes reacts differently.  They overcorrected her eyes because statistically, eyes will drift outward again following surgery.  Because of this, her eyes were crossing in a lot in the beginning.  They still seem to me to be inward, but the PO said it is because I am not used to seeing her eyes straight.  When her glasses are off (right before bed) her eyes are all over the place.  I am told this is normal.

Right now, I am still a little worried, but it seems like her eyes just need a little more time to get used to their new position.  The prescription in her stronger eye has changed from -1 to -3. I am told this is also normal as her brain is recognizing the weaker eye and making adjustments.  Here are some pictures to help tell her story.  I promise she is usually smiling from ear to ear, but HATES to look at the camera. 

The first picture was taken in December before the surgery.  The second picture was taken the day after and the third picture is from today – 2 months after the surgery.  The only way I could get her to look at the camera was to let her eat the candy from the candy necklace she just made =)

This update comes from Danielle, whose daughter Mia had cataract surgery as an infant, and continues to deal with glaucoma, patching, and contacts.  You can read more of Danielle’s posts about Mia here (introducing Mia, after her second glaucoma surgery, occluding lens for patching, glaucoma valve shifting and corneal scarring, Mia’s contact lens).  -Ann Z

Mia at 20 months

I have been avoiding little four eyes because we have been having a tough time with contacts and patching.  As Mia gets older, the stronger she gets, not only with physical strength, but with mental strength and stubbornness. She is my little firecracker and she does not like having her vision taken away. She has become crafty with her contact lenses and has learned how to remove them, or a new trick where she puts her finger on her occlusion lens and slides it to the corner of her eye. It must be very uncomfortable, however she chooses to be uncomfortable in order to see.  Mia’s vision without correction is 20/1300 so she is legally blind in her right eye; and with correction she is 20/360. I compare her vision with someone that is blind, so when she is patched I am literally stealing her vision and expecting her to function and move around like she can see; which she can’t. I understand that patching will increase her vision, however the time it will take to regain vision in her right eye is torture to her.

Mia after her glaucoma surgery

During an exam under anesthesia 2 months ago, we found out that Mia’s glaucoma returned. She had valve surgery 3 weeks ago and everything went really well.  As usual she was starved when she woke up and wanted her juice and crackers, and to get the hell out of the hospital; saying “bye bye” every few seconds. Since Mia is so strong willed about having anything on her face, we purchased soft splints for her arms to prevent her from removing her eye shield and bandages. She hates the splints and learned very quickly to keep her hands away from her eye or they will go back on.  It broke my heart that she does not even realize that her right eye is covered; which means she is pretty much blind in this eye. She is walking around like normal, not even skipping a beat. It kills me, it makes me feel like I have not done everything in my power to prevent her right eye from going blind. I am sitting here crying as I type thinking, how and why. This has been such a hard and devastating road that we have traveled. But I hope and pray that it is not to late to save her vision. Sometimes I think about the choices we have made; what if we decided to do nothing when we were informed about her cataract when she was 12 days old. Yes, she would have gone blind in her eye, however she would not have to endure surgery after surgery, or nystagmus, amblyopia, exotropia, glaucoma, patching, glasses, contact lenses, eyes drops, ointments. My father always says “you make the best decision based on the information you are provided with, that is all you can do”. But this does not make me feel like the decisions we have made were the right decisions, or even the best decisions. Mia is only 20 months old and she has had to endure more than most people during her short 20 months of life. I just wish I could take it all away, that I could be the one going through all of this rather than her. I am sorry that this post is so pessimistic, I am just having a difficult time and I need to get this off my chest and this is the best place for me to vent, you all know the pain I am feeling.

We are planning to use her arm splints to help with patch time. I just hope that we have not lost all that we have worked so hard to save.

To all the parents that are faced with surgery, it is hard, the hardest situation you will ever be placed in, and going in the operating room to assist with putting your child under is the hardest part. I have done this 4 times and it does not get any easier.

I have attached a few pictures of Mia. I hope everyone is doing great, and you all had a wonderful Christmas and/or holiday season.

Dec. 23rd Elly just woke up (for more than 30 seconds) in good spirits. It has been 7 hours since her surgery.  The first thing she wanted to do was see her red eyes and because of the book “Pinkalicious,” she wanted to drink something pink. If you haven’t read this book, I reccomend it before this surgery as the little girl turns pink and crys pink tears. Then she wanted the bandage off her hand that had the IV and her name bracelet from the hospital off.  Her eyes are still red (more than I had expected) and has bloody tears.  She threw up the Gatorade they gave her all over the car, but is now drinking water and eating saltines.  Nothing like a coating of surgery blue liquid over everything to lighten up the mood.  We had a plastic bag, it just wasn’t out and ready.

She has been napping since the procedure, only waking up for seconds to tell us she was thirsty.  She would sip and then throw up. We took turns sitting by her bedside.  The hospital staff encouraged us to have her sleep as much as possible and reminded us that it takes 24 hours for the drugs to leave their system, so we need to closely watch her.  I completely panicked this afternoon when she woke up and said, “I can’t see.” It took me a millisecond to realize it was because she didn’t have her… glasses on. Her eyes are sometimes turning in, which the doctor said was a good thing, as her brain is recognising the change.   I am still completely a nervous wreck.  As I type and she is eating her crackers there is blood dripping from her nose (they said this could happen), bloodly tears slowly dripping down her cheeks, and reddish purple eyes.   It makes me want to cry and I do hope she is not in as much pain as she looks like she is.  It is like a picture from a Horor Film.  As soon as she is done eating, we are going to have some major mommy and Elly time. 4:30 p.M.

Update: It is now 6:00 and we just ate dinner.  She hasn’t thrown up in about 3 hours and we gave her rice with some cinamin sugar and milk – of course she wanted some chicken too.  I am hoping it wasn’t too much.  She is now in her Cinderella dress up costume trying to convince her papa to do flips with her (not a chance) They have settled on dancing to the music on the radio.  We have had 2 more bloody noses and some more tears.  Her right eye looks worse than the others and has more red and purple than the other eye.

For parents whose children may have to go through this or a similar procedure in the future

Things to remember; Put your kid in a button down blouse or jammies, stay positive at all times and use words like “an appointment at a different place,”  The book “Pinkalicious” was great because she LOVES being Pink and has Pink Tears.  Bring your kids blanket, doll or other lovey.

Things to have on hand for recovery; Gatoraid or Apple Juice Boxes, Popsicle, Children’s Tylonol or what pain relief your PO says is ok to give.  Fun treats or packages to open after medicine placement (gel or drops)  4 for every day

Update Dec. 26th:  Elly’s eyes are still very red.  Maybe someday I will have enough guts to post a picture of her eyes.  I still look at the blood-shot eyes and sad face and cry…maybe when they get better I can post it to help parents understand what their eyes may look like.  Just not now.  The IV left a really big hole in her hand and it has bruising around it, but she doesn’t seem to notice.  We have also had pretty good luck with the gel medicine.  I asked about the drops since parents had posted that they were easier, but the PO said the gel was more effective – so we tried that first.  All the Christmas candy is coming into good use.  My child, who normally doesn’t have candy, is in LOVE.  After each placement of medicine, she gets to choose a treat (piece of candy cane, M&M, gum drop and more)  This morning, she started negotiating for more.  “If I hold still for 2 eyes, then I should get 2 pieces of candy.”  Ok, not a problem in this household… here you go.   Then 30  minutes later, “Mom, I’m ready for the medicine again!”  She had found another cool Christmas treat. (not a chance, must wait a couple more hours)  At least it is making the process more bearable and she is willingly coming to get the gel in.  They said it doesn’t sting, but makes their vision a little cloudy where it covers the eye.  I still have to pry her eyes open to get it into the corner, but I have to admit, it is WAY easier than putting the atropine drops in her eyes. I think that is because I know it is not hurting her, but helping her recover faster.

December 29th.  We had our post op appointment today.  It started out with me dragging Elly out of the car to see the PO.  “I do NOT want to see her today.”  she screamed.  I reminded her this was the usual place and that all she was doing is checking her eyes today.  This did not go over well.  When she saw our PO, she took off running the other way, so fast that she biffed it and skinned her knees and hands on the sidewalk.   When we finally got her in the exam room ( the po grabbed a slinky as a gift to Elly and completed her exam with expert speed!) Elly repeated that she did not like Dr. Khuddus.  We tried to be quick and positive, but it looks like the eye with bad vision is turning in further than expected.  ARGH.  I understand that the brain is similar to the beginning and we have to begin to train it all over again that yes, that eye does need to be used.  Back to patching….  Thank goodness I had put a whole bunch of fun books on hold at the library.  We stopped there on the way home and Elly was ok with patching while we looked at all of our cool new books.  I am just praying we can get these eyes straight as I have absolutely no desire to go through this surgery any time again soon. =(

Dear Doctor of My Child’s Eyes,

Thank you for being so positive about my child’s vision and taking the time each visit to answer all of my questions.  I am very nervous about Elliana’s muscle surgery tomorrow, so much that it is hard to sleep and I have often found my eyes welling up with tears thinking about it.  I know that you have done this surgery many times and are experienced, but this is my first time and it is my only daughter who will be put to sleep and operated on.

It meant a lot to me yesterday when you walked me through step by step how the procedure would be done.  Explaining that as she fell asleep with the anesthesia that you would take her to see the fish in the fish tank and play little games with her so that she would be relaxed and with someone she knows and trusts. Letting us know that she will not come out with bandages or an IV, but that she will be pretty angry for the first 20 minutes.

I also appreciate how calmly you explained how the procedure would work to my 3 year old.  It demonstrated that you not only know about eyes, but also about children.  I could not have done a better job myself.  I like how you told her that the office visits help make her eyes stronger, the patches help make her eyes stronger, the glasses help make her eyes stronger and now you are going help make her eyes stronger.  That she would see you for an appointment at a different place and that you would be wearing green pants and a green shirt.  We would meet a whole bunch of new people and then your would go back into a different room so that you could help make her eyes stronger.  I also appreciate how you told her that when she woke up she would be angry and that her eyes may be sore.

We, as parents, trust that you will make the best decisions about the new placement of her eye muscles based on your many measurements over the last year and a half.  Her eyes will be in good hands.  Please take good care of her.

Amanda

Left eye turns out and Right eye turns out

Yeah for patching!

I am very excited to share with you that we have now had 3 visits where Elliana is measuring at 20/40 and 20/50 (with glasses of course) Our 12 hour, full time, patching has paid off. The PO said that she never imagined her vision getting to this level of vision and said that with her Exotropia and severe Ambliopia only 1 in 10 kids will get to this point where both eyes are relatively equal. She is also now turning both eyes outward, as opposed to only her left eye. While this may seam a digression, it actually means that her brain is using both eyes and that she is using both equally!

Now for my reward …. Surgery. I know, one would think all this hard work would actually just give us a great prognosis and allow me to go home a celebrate. NO WAY – because her vision has improved to a point in which she is using both eyes equally, the PO thinks it is the best time for Bilateral Lateral Rectus Surgery. Originally, she was thinking maybe around the kindergarten age, but after discussion Elliana’s lack of any depth perception (usually by age 2, some chance of gaining it before age 5) and her vision improvement, now is the time.

So, I am back to research mode. Thankfully, we now have a very good relationship with the doctor and I have utmost confidence in her and her staff. My baby’s eyes are truly in good hands. It is also re-assuring to know that she performs on average 8-10 of these surgeries weekly and has few patients return for “touch up surgeries.” I am hoping those of you who have been through this surgery with active toddlers / preschoolers can help me prepare both my family and Elliana on what to expect during, after and in the recovery stages.

Wow, it’s been a long time since I’ve done one of these…

• Pictures – Amblyopia Kids has a post about her daughter’s preschool pictures.  When her daughter got out of school that day, she said that the photographer took her glasses off for the picture.  Do you have pictures taken of your child with or without your glasses?  Would you want a photographer to take their glasses off?  Stop by and leave your thoughts.
• Strabismus Surgery – Motherhood and Potatoes has a wonderful and thorough post about their experience with her daughter C’s strabismus surgery (everything went fine and she’s recovering well).
• Eye of the Tigger event in Toronto – parents of children with strabismus are invited to an event in Toronto, Canada to learn more about treatment options from professions.  November 14, starting at 10:00 am.  Check out the website or the facebook group for more details.
• Call for blogs – I’ve organized the list of blogs on the resources for parents page and added a few more.  Who am I missing?

This question came in from Darlene.  -Ann Z

My son had surgery to correct his exotropia but it hasnt seemed to help straighten his eye.  Does anyone have any experience with their child needing multiple strabismus surgeries?