April 1, 2012

My Baby's Eyes (Intermittent Exotropia)

I'm linking up to The Paper Mama photo challenge.  The theme this week is Eyes!  I couldn't think of a better picture to submit.  I love Alivia's hair pulled back this way; it really showcases those eyes of hers!  Although the color of her eyes is gorgeous (hazel, like her daddy), something about this black & white just works!

Speaking of eyes, we've recently learned that Alivia has intermittent exotropia which is a form of strabismus.  This is when one of the eyes acts independently from the other.  In her case, her left eye drifts outward when looking at far away objects.  When I first brought her in to see the Pediatric Ophthalmology Specialist at Children's Hospital in Boston, about 2 months ago, I was seeing her eye do this about 6 times a day.  Recently, however, it has gotten increasingly worse.  Now I was seeing it about 3-6 times an hour!  Apparently, when the eye acts independently, it is not communicating with the brain.  This is a scary thought!  The eye becomes weaker and the vision starts to deteriorate.  In absolute worse cases, the vision can be lost completely.  When this happens, it is called amblyopia or lazy eye. 
 

In my quest to find everything I absolutely could about intermittent exotropia, I found the following treatment options:

1.  Eye patch.  They cover the strong eye so that the person is forced to use the weaker eye in hopes to strengthen it.  I can't imagine trying to patch my toddler's eye.
2.  Glasses.  Only for those that suffer some type of vision loss or deterioration.
3.  Eye drops.  This acts sort of the same as the eye patch although I hear it's only to treat amblyopia.  I have to look into this more.
4.  Eye muscle exercises.  Try getting your toddler to do those!
5.  Surgery.  This will correct the muscle in the eye that is causing the eye to turn in or out.  It isn't 100% affective and it's usually used as a last resort.  I also found the following disturbing piece of information on http://www.strabismus.org/intermittent_exotropia.html

Treatment for intermittent exotropia does not have to occur immediately. Since the brain and eyes work properly some of the time, time is on your side. As a matter of fact, early surgery has the potential of disturbing the ability of the brain for fusion in the future and can cause a permanent reduction in vision (amblyopia).

OMG!

So now I've come to the point where I'm thinking "okay it's time to treat this".  No more taking the conservative route!  I can't just sit back and watch it get worse.  I feel like we were lucky to catch it so early as it gives us the opportunity to treat it before any vision loss were to occur.   My hopes are to get her seen by the doctor this week. 

In the meantime, I'm a worried mama.  I'm saddened and afraid.  What's worse too, is that Alivia rubs her eye which, to me, is a clear indicator that it is bothersome.  Is it too much to ask for her to be healthy from head to toe?  When I think that this is the worse possible thing that could happen, I don't have to look far to remind myself that there is worse out there.  I just have to look across the room, at my husband, to remember the Cancer that he once fought.  Heck, I could look in the mirror and remember the seizures that took control of my life at one point.   It's really not as bad as it seems.  I'm just emotional.  Both her father and I are an emotional mess and rightfully so I would think. 

Regardless of it all, I will be grateful to God and will continue to remind myself that this too shall pass.
The Paper Mama Photo Challenge

16 comments :

  1. Beautiful photo. I'm sorry about what's going on. I hope she's not in any pain and that you and your team are able to help her keep her vision. big hugs!

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  2. This is a gorgeous photo! She is beautiful! :)

    I want to tell you my son has Strabismus, he is currently 14 and has had two surgeries. They both went well and he's had no bad side effects. We did try the alternative methods before the surgery, but none of them worked well enough. I wish you the best of luck and it you ever need to talk about it feel free to email me @phoenixxrises @ gmail

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  3. I'm so sorry to hear about all of this. I can understand how you and your husband would be very emotional about it. I'll be praying for all three of you and that you make the best decision for you little one.

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  4. I just wanted to say 'hello'. I know what you're going through. My 19 month old daughter was also diagnosed with intermittent exotropia when she was 6 months old which seems to be increasing in frequency too. Doctors have been keeping an eye on it but don't want to do anything too drastic as her eyes are still functioning together more than half the time. Please know that you're not alone. There are far worse things that could be wrong with our little ones. I try to be mindful of that every time I see her eyes drift out. Please post updates on her progress! Best wishes for your family and Alivia's beautiful eyes!!

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    1. I plan on posting updates for sure. As of now, I'm supposed to be patching her good eye. Now, wouldn't you believe that I'm starting to see it in the other eye. I have to call the doctor to find out where to go from here.

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  5. Your daughter is beautiful. My daughter Allison just turned 2 and I notice BOTH eyes doing this...wonder what the outcome is for that. Hang in there and keep us updated.

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  6. my 10 month old daughter has it in both of her eyes. I started noticing her right eye having trouble when she was about 6 months old but very rarely and now as of the past few weeks it is in both eyes and it is all the time. I finally got her in to see in a pediatric ophthalmologist last week and he confirmed that she will only get better with surgery. it is so frustrating as a parent to see your child struggle in anyway and knowing that my daughter can't see hardly at all right now is so hard to bear. she can only focus on my face if it is within 6 inches of her eyes. just last month she could see me just fine if I was up to 5 or 10 feet away. I appreciate your article and it is reassuring to see the other comments posted. I hope and pray that the surgery will work for my daughter because at this point her eyes have deteriorated enough to where glasses and or a patch will not do any good. good luck with your beautiful daughter!

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  7. Hi Elena- Dave K (your HS locker buddy) I was searching for this condition and can't believe that your blog popped up. We have the same thing w/our little girl, probably even the same doctor. Noticed it in the fall, doesn't seem to be getting any better. We've been patching since last week- several months of eye exercises didn't help. I'll let you know if anything we do helps!

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  8. Yes, please keep postin updates -- just now beginning to do research!

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  9. Yes, please keep postin updates -- just now beginning to do research!

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  10. Yes, please post updates, as I'm just now beginning to do my research!

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  11. My 23 month old daughter was diagnosed with the same thing. The eye patch, which reminds me of a band-aid, was recommended but she immediately takes it off! The doctor said it's okay if she does that and that we can only monitor for now. Has anyone had success in trying to make young children wear the patch? Does a pirate's eye patch work?

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  12. Please post updastes, my son was just diagnosed and I am really nervous about doing surgery on him

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  13. Yes, I would like to know what you decided to do. Same boat. Scared for surgery since he was a micro preemie.

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  14. It's the first time I heard of this disease, it’s quite scary. I noticed that you posted this back in April 2012, so how's your daughter now? I hope she is well. Anyhow, I don't know if this could help but I know a multi-awarded Arizona eye specialists, specifically an Arizona retinal surgeon who can treat a variety of eye issues.

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  15. Hi. I just noticed my 14 month old daughters eye drift a few times a day when she was sick. I am devastated and scared. May I ask how your daughter is doing now? I appreciate any guidance and support. Thank u.

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