Xander's Eye Story, Cyclic Esotropia - Eye Patch Pattern

Xander was 2.5 years of age we noticed something happening with his eyes. One day at dinner we noticed Xander's right eye turn in toward his nose for a few moments. He was being silly at the moment, but it did give us a moment of pause - enough to heighten our awareness. About a week later driving in the car his right eye turned again, but this time for about 10 min and then it returned position. We called our Dr. to see what she thought, and she referred us immediately to a Pediatric Ophthalmologist.


While we were waiting for an appointment, the turning became rapidly more constant. It was determined that his right eye was much weaker than the left, and that he was also farsighted. Farsightedness apparently is quite normal in children to a degree and usually resolves, but the difference in sight between the eyes was causing a problem called Esotropia - Intermittent Strabismus, turning of his right eye inward.

In addition to the glasses Xander needed to have his left eye ( his "good/strong"eye) patched in order to force his brain to use his right eye to strengthen his vision. His left eye was patched for a total of 6hrs per day, broken up into 2 sessions.
This was so difficult as he was a busy 2.5 year old and trying to get him to wear glasses was a big adjustment. We bought glasses with clear lenses, so that we could all wear them together. We also had his favorite stuffed animal wear glasses. Xander really did do amazingly well, and in a short period time was wearing his glasses all the time!

The patching however was a challenge. We started out using the adhesive version from the drug store, because we did not know what else to use or what would be approved by our Doctor. The first day we patched and tried to remove it, his little skin peeled and he was sore and red.

I found all kinds of designs for patches online, and came up with a patch that worked well for Xander. His fit behind his glasses, This made life easier, and it completely occluded vision in his left eye.

Patching was going really well with these new patches. There were a few times that he took it off, but we were able to work this out fairly easily. Then something really odd started to happen. His vision was improving in his right eye, and was getting close to matching his left eye. The odd part was that (when wearing glasses) his right eye would still turn - for 1 day - the following day he would wake with his eyes perfectly straight - the next day the left eye would turn in - followed by a day of both straight. This 24hr cycle started off slowly and we were not 100% sure of what was happening until the pattern became unmistakable.

We let his PO know what was happening, but without daily visits he could not determine without seeing first hand what was happening. We were located 1.5hrs from the hospital, so I asked if I could photograph his eyes and email the pictures for a few days. He agreed, and this is exactly what we did.
Xander had developed a rare form of Strabismus called Cyclic Esotropia. It's hard to believe unless you see if for yourself.







This was a condition that could not be corrected with glasses or patching as his vision was now close in both eyes. Luckily our Pediatric Ophthalmologist was/is also a very skilled Eye Surgeon.
At age three plus he had surgery on both eyes.
The surgery was extremely successful, and his eye alignment remains stable today.

 Xander is still wearing glasses today, because shortly after surgery he developed an astigmatism.
We have had such a hard time finding great glasses for Xander now, because he is in that stage where kids are too small but most adult frames are too large. We were very excited to find these new frames, they are Puma PU 15277 in case anyone is interested. They have super adjustable ear pieces, and have a metal lip inside the lens frames that work well with a thicker lens.


   I thought I would share this in hope that it will help.
I am offering a free pattern and instructions for the patch I created for Xander.
Xander called the patch his "fish", and it changed the entire experience for him.

Our patch is completely NO SEW - easy and cheap to make!! I have made a pattern for it with instructions. When you print this pattern please DO NOT SHRINK to fit in your printer settings or the scale will be off. If printed at the correct scale the patch should measure approx 4.5" long.
To attach the patch - put it over the nose piece first,
and close the arm enough to slip it over the ear piece.

Patching is not always easy for a young child, but this did make

 things a little more comfortable for him. It was also fun for Xander

 to pick his prints and colours.

I hope this will be of use to some of you.

Please let me now if you use it.


Thanks for visiting with us!



CONVERSATION

19 comments:

  1. Oh wow! Your story sounded similar to mine, at first. When my oldest (Hoss) was little, we saw his eye turn a LOT - only the right eye turned in. It wouldn't last that long, and when he was 1 1/2 - 2, we thought it was just something funny he figured out that he could do. Then, as he got older, it started happening on its own, and especially when he got tired in the evenings/night time. So at 3 years, I took him in, and we, too, were sent to a ped Op. Hoss ended up wearing glasses for a year, and we had to patch his eye - he was diagnosed with an atrophia (I believe) - or, in laymen's terms, lazy eye. After about a year, the eye strengthened. Although he will never have perfect vision, and may have to wear glasses again in his future, right now his eyes are close enough that his Op said glasses aren't going to make enough of a difference to be necessary! I wish I'd thought to make him an eye patch - we dealt with the adhesive ones, too, and we all hated them - both him, and my husband and I. We also tried a pirate style patch, but that was just difficult to keep on with his glasses! This one is so neat!

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    1. Wow that's amazing that his eyes have done so well!!! Strambismus in and of itself is quite common - it's the Cyclic Esotropia part that is very rare. This patch was just wonderful for Xander and really stayed in place. He also wore a backstrap for the first couple of years and that helped as well. Thank you so much for sharing your story!! It is so encouraging to hear how others manage and work through events such as this <3

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    2. Amblyopia - that's the word I was looking for! :) You are right, however - I have never heard of Cyclic Esotropia before now. I am thankful to have that information, and so glad that he made it through eye surgery fairly well! I remember being so afraid Hoss' eye would continure to get worse instead of better, and we would find ourselves there. I think you are amazingly strong to have made it through that! :)

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    3. I hear you Amy!! It is scary that's for sure, especially when it's your small child :( You are so very sweet and kind. It's wonderful to hear your thoughts and encouragement <3 Thank you!!

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  2. Thank you so much for the pattern. I think it will be very helpful to one of our families.

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  3. Hello, I live in Taiwan, and my 5-year-old daughter since October 2013 also suffering from cyclic esotropia. We are very worried, because this is a rare disease, never heard anyone get this disease. My daughter is the day straight eye, another day is esotropia. Very incredible! It's hard to believe! We did an MRI. Next month will arrange for the surgery, and I hope I can be as successful as you!

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    1. Thank you so much for writing to us!! When this happened we were frightened as well, and could find very little practical information. We really hoped that sharing our story would be helpful. I wish you and your daughter the very best of luck with surgery!! Please let us know how she is <3

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    2. We completed the surgery in April 2014 at the National Taiwan University in Taiwan , and now has over four months.My girl's eyes are normal now,and her mood is very stable.

      我們在2014年4月完成了手術,在台灣台大兒童眼科做的手術,現在已經過了4個月,都很正常,孩子的情緒也很穩定。我很高興知道世界上有跟我們一樣情況的人,也祝福大家都可以恢復健康!

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    3. Oh my!! I am so happy to hear that!! Thank you for sharing your news and I wish you all well :)

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  4. My 2 yr old daugther suffering cyclic esotropia ,when she wake up her right eye turn in toward to her nose,and then the other day she wake up her eyes is straigth,alternate day,,we go to the PO,and he said that cyclic esotropia is a rare,and he prescribe glasses,I live in Philippines,I hope glasses can help to my daugter.

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    1. It is so tough when they are so little <3 I do hope you have the best of luck with glasses. Unfortunately for Xander the glasses worked well on the days his eyes were forward, but had no impact on correcting the turning itself. However I can only speak for Xander and our experience. His eyes have remained extremely stable ever since surgery. The only time I notice anything is if he is momentarily without his glasses and focusing hard on something - for example his passport photo. I do with you the very best of luck and would love to know how your daughter does.
      Thank you for writing!!
      I love that you ladies have shared, because there is so little practical information to be found!!

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  5. My son was diagnosed today with these problems pseudoesotropia, estropia,amblyopia,strabismus,an astigmatism his father has the same things. I noticed when my son was 9 months that one of his eyes would go towards his nose then other times it would go toward the direction of his ear i told his pediatrician but was told it is normal an will straighten itself out well i kept a eye on it an by the time he was 1 it was both eyes an at this point my son could actually manipulate them for example he could make one eyeball look up an at the same time make the other eye look down i freaked out so i got him a appointment with a eye doctor my husband as well to be able to see if my son may have what my husband has well just like my sons doctor she said it was normal an would correct itself by the time he was 2 which was only 2 months away so i said it will correct itself in that time she had nothing to say about it she refused to investigate anymore an then examined my husband an said my husbands eye problems were all in his mind i said really so for 38yrs my husbands eye problems have been all in his mind my husbands started when he was 4 she stated mam his not had it that long i couldnt believe her attitude we denied her statement well i tried to get a second opinion but i needed a referral now because the eye doctor reported her results to my sons doctor an he was just as arrogant as she was an since he believed her over me he refused to refer him an my problem was i couldnt get another doctor cause at the time that pediatric clinic was the only one that took my sons insurance its 6 yrs later an ive been trying to find out what was wrong with him for this long an finally a friend found a specialist eye doctor that would check him with no referral needed an would also check toddlers as well an we went today doctor says it might be to late for my son his going to try the eye patch treatment but doubts it will work but it turns out my 2 yr old daughter has signs of pseudoesotropia,hyeropia, an astigmatism an just needs to be watched but if it goes further she can be treated properly something her brother was never given a chance to have my 1yr old daughter will be checked at the end of this yr after 2nd birthday to see if she has it as well their father has them all turns out its all genetic

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    1. Oh Michele I am so very sorry this has happened to your family. I am so happy you have shared your story here!! It is so important to let others know what has happened in hope that others will not accept advice like this. What a diligent mom you are!! Our PO said that he has seen this happen far too often where the problem is ignored till a later stage. I can imagine how frustrated you all must be. I am so happy to hear that you have finally found someone who understands and is treating your children with such great care. I hope with all my heart that the patching helps. Please let us know how you all are doing. Big hugs and very best of luck!!

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    2. Thank u! I was so angry i was crying i can never understand a doctor who thinks he knows more than the very patient his treating an refuses to listen to parents or guardians of the children they treat an because of these doctors adults as well as children suffer for their arrogance children especially cause they cant fight back that is why i told u my story i want parents to know that if they know their child is suffering an the doctor says otherwise dont listen get as many opinions as possible until u find a pediatric doctor that will listen i tried but ran out of pediatricians that took my sons insurance funny thing is it was 6 different pediatricians in that one clinic at least with my 2 daughters they want have to suffer like their brother has had to i can actually get them proper care. I will let u know what happens with my son thank u again an god bless

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    3. I love ur patch wish i knew how to make it lol i only crochet bead an crosstitch i found ur site by accident i was searching for a crocheted eye patch pattern an ur site popped up i think god sent me to ur site to tell my story i did find a pattern tho 2 actually a skull an eyeball my son picked the eyeball an said mama i want it to be a alien eyeball lol he loves it lol

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    4. I am so happy you found us Michele!! Please let us know how the patch turns out!! All the best and we'll look forward to hearing from you!! Hugs :)

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  6. Thank you for sharing your story. This same thing has been happening to my daughter. I thought I was a little crazy until I googled "eye turn every other day." It's a real thing! Who knew? We had a similar beginning where we were patching and things were going fine and then the patching ceased to work and the cyclic thing started. I didn't notice the specific pattern until about a month ago.

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    1. Thank you for sharing your story with us here. I hope your daughter is fairing well. Please let us know how she is doing <3

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