Current information about 1p36 Deletion Syndrome indicates that my daughter my have trouble with her eyesight. So around 18 months we took her for her first eye exam. The doctor told us that her eyes appeared perfectly healthy and that her vision was normal for an 18 month old. My wife and I were glad to hear that good news and hadn't given vision much more thought.
Until about a month ago. I've begun to notice that my daughter's eyes don't seem to point the same direction when she looks at me. It comes off as looking vaguely cross-eyed. My wife, ever the observant one, noticed this first, and thought to ask the physical therapist about it. The therapist was interested and asked if the cross-eyedness gets better or worse when my daughter's well rested or tired. So I've been watching to see if there's a difference. I really can't tell if there is or not.
So I guess it's back to the eye doctor. We've already set up the appointment. But I wonder if this is some sort of lazy eye thing or if there are deeper neurological issues lurking beneath this symptom. So have other 1p36 parents seen this? The pictures of kids I've seen in medical books do seem to have a mild cross-eyed look to them. Maybe this is the result of my daughter's eyes being placed so close together? As usual, I have more questions than answers, but as soon as I get some answers, I'll post them here.
4 comments:
EK is due for her next ophthalmology appt next week. What I understand so far (from reading etc) is that it is common for 1p36'ers to have what is known as 'pseudo-strabismus', because they have no bridge of their noses, and the skin stretches further over the inner corner of their eye (epicanthal fold). This give the illusion of their being cross-eyed.
That being said, it goes along with the low muscle tone that 1p36'ers tend to have 'accommodative strabismus', where they will have one or both eyes float crossed on occasion, especially when they are focusing on things close by, or are tired. I see this a lot in EK when she is tired and is watching her bottle come closer. The ophthalmologist can trigger it occasionally, but it is something they are keeping an eye on.
The problem with strabismus (cross-eyed-ness) is that the brain will actually quit using the eye because it doesn't contribute to a complete picture.
EK also has the precursors to lazy-eye -- her eyelids sit really low, but they are equal bilaterally, so its hard to see sometimes. She is being watched for the strabismus, the low eyelids, and possible increased pressure in they eye from the eyelids, and possible development of cataracts (another thing I have found in the literature that develops in some 1p36'ers).
I would love to hear what you find out at your little one's next appointment, and I will let you know what we find out next week with EK.
--bella
Rain on Tulips
Just for fun, by the way: the other day I thought it was interesting when I looked at pictures of your little one and mine side by side, so I put their pics together and was just shocked! They could be sisters! (Amazing stuff, really!)
Just thought I would share!
--bella
Rain on Tulips
Wow, the similarities between our daughter's is remarkable! I can't believe how much alike they look!
Thank you also for all the information about the different eye conditions. I hope they're able to diagnose and correct my daughter's vision issues quickly. Her hearing isn't great and it'd really be difficult if her vision was poor too. I'll keep you up to date on her progress.
EK had her ophthalmology appointment today -- thought I would share!
--bella
Rain on Tulips
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