little four eyes

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 =)

upset Dagny

When my daughter Dagny was five months old she would cross her eyes when she was upset about something. It was a phase that only lasted a few weeks and I was relieved when it stopped. At her one year well-baby checkup her pediatrician asked me if I noticed her right eye turning in. It was so slight that I often thought I might be imagining it but it worsened rapidly over the next few months while I waited for her optical appointment. Her eye crossing became a source of stress for me. Somehow I connected it to my failure as a mother. I know this is completely unrealistic but I knew it must be my fault. I felt as if people were judging her, and me, for it.

On the day of the appointment we sat in the waiting room for hours waiting to be seen. I was nervous the entire time and Dagny was beginning to get antsy. I was relieved when we finally met the staff. They were warm and welcoming. I found out that my daughter is farsighted and she was given a prescription for glasses.  We made progress and I was anxious to get the glasses. I rushed home and began calling optical stores in my area. There are many within walking distance so I knew we would be just fine but one after another the stores told me that they could not help me with a child of 15 months.

“We don’t have glasses that small.”

“I have never worked with a baby before.”

“Maybe you can call another branch. I am not really…uh…can you hold please?”

After making over a dozen phone calls I broke down and cried. I felt defeated. All of the emotions came out at once. I did not want my baby to face this obstacle so early in life. I never had glasses soI could not relate to her vision problems and I know that this will be something she will always have to deal with.

We finally found eyeglasses nearly an hour away. She has had them for a few days now. She wore them all day at first but she is already struggling with them. She bent them on day two and today scratched a lens. I am just going to keep smiling and putting them back on her face. We go back in a couple months to see if her vision has changed any. She still crosses her eyes. I was told that the glasses would correct this but I was not told if it would be instantaneous or gradually.

Dagny's new glasses

I will learn to accept this over time as I learn more about her condition and what I can do to help her. It’s not the worst thing ever and I am so glad that we caught it early. Besides it is the cutest thing ever when a 15 month old says “gyasses.”

I was just sent this question, and have no experience with this, so I thought I’d see if anyone else had dealt with this:

My daughter has been crossing her right eye for about six months and it is getting progressively worse. We finally got in to the children’s hospital and the doctor was shocked to find that the eye she is crossing is her stronger eye. Essentially she is favoring her weaker eye. Do you know of any other parents whose children did this? The doctor said it made no sense.

Her prescription is

Left eye
SPH: +3 CYL: +.5 Axis 90

Right eye
SPH +3.5 CYL +1 Axis 90

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

Zoe had her regular eye appointment this morning.  I had been looking forward to it for a while because I was anxious to know whether she has developed any binocular vision.  Zoe was looking forward to it because she knows the eye doctor doesn’t give shots.  She had been asking about the shots in particular for a couple of months now, especially since her last visit to the pediatrician did involve shots.  The no shots is a big selling point for the eye doctor.

Lea chart shapes. Today was not a good day for the house shape.

Her visual acuity measured at 20/25 and 20/30, which was good to hear.  Last appointment, she hated the square shape and refused to say square or point to the square, even though she’d get every other shape right.  This time, it was the house shape that annoyed her.  Gotta love 3 year olds and their moods.

We got to give her ophthalmologist the Children’s Eye Foundation calendar that has Zoe on the page for December.  We hadn’t told the doctor about it at our last visit (I think we didn’t know which pictures had been chosen yet), so that was a fun surprise.  And I was happy to learn that Zoe’s prescription hasn’t changed.  I had already decided we’d keep Zoe’s frames for another year (as long as they don’t get irreparably damaged), but it’s nice to get to keep the lenses, too.  Though now they’re out of warranty, so we’ll have to pay to replace them if they get horribly scratched.

But the big news is that she did pass a couple of the stereoscopic vision tests.  She reached out and tried to touch the square that she saw in 3-d!  I am simply thrilled.

(Shortly thereafter, we got into a huge fight over whether or not I should have drank any of her apple juice – answer: no – but I’m going to focus on the good news of the day).

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.

I recently got a question about when a doctor might not prescribe glasses for a child, even if the child was nearsighted or farsighted.  I did some research and found consensus guidelines for prescribing glasses published by the American Academy of Ophthalmology (Pediatric Eye Evaluations: Screening and Comprehensive Ophthalmic Evaluation, 2007, link to full text).

Before jumping to the guidelines, it’s worth emphasizing that these are general guidelines only, based on professional experience and not scientifically researched data.  Let me repeat that: there are no good studies showing when a child should be prescribed glasses – this is in part due to the fact that prescribing glasses is complicated.  Each doctor needs to take into account everything about the individual patient and there are many things that would lead a doctor to prescribe glasses at much lower refractive errors.  These include strabismus or history of strabismus, developmental delays, other medical issues, visual acuity, acceptance of glasses, among other factors.

Prescribing Glasses to Children with Anisometropia

Children who have a significant difference in refractive error between their eyes (called “anisometropia”) are more likely to be prescribed glasses.  This is because anisometropia is a significant factor is causing amblyopia.  If one eye sees much better than the other, the brain is more likely to favor the vision from the “good” eye, leading to amblyopia.

~~~

Prescribing Glasses to Children with Isometropia

For children whose eyes have similar refractive errors (so both eyes are seeing similarly), also called “isometropia”, doctors are less likely to prescribe glasses at lower refractive errors.  In this case, there is a difference in prescribing guidelines for farsighted children depending on whether or not the child has strabismus or misaligned eyes.  Again, this is due to the increased risk of developing amblyopia if strabismus is present.

It is again worth noting that these are only guidelines, and in fact, other studies have shown that many doctors prefer to prescribe glasses at lower refractive errors (Spectacle prescribing recommendations of AAPOS members).

The guidelines do fit closely with our own experience.  When we first took Zoe in to the ophthalmologist, she was not crossing her eyes often, or severely.  In fact, in some of the pictures we took with us, while it looked like her eyes were crossed, when you looked at the reflection of the flash in her pupils, they were actually aligned.  Her refractive error at that time was probably around +4.5 or +5, high enough that the ophthalmologist told us to keep a close eye out for her eyes crossing and told us to come back in 6 months for a follow-up.  Four months later, her eyes started crossing significantly, and her ophthalmologist had us back in and got her into glasses.

If you ever have a question as to why your doctor is or is not prescribing glasses for your child, please ask your doctor for an explanation.  If you still are unsure, or if that explanation does not make sense, a second opinion may well be in order.

I just got this question from Jenny.  Her daughter is almost 4 and has just (this weekend) gotten glasses for strabismus, amblyopia, and farsightedness.  She’s wondering whether her daughter should wear her glasses in her gymnastics and skating classes.  She was also thinking of signing her up for skiing class this winter, but is hesitant now with her daughter in glasses.  What, if any, physical activities has your child done with glasses?  Any constraints or tips?

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?