So, at our next appointment, I spoke with the pediatrician and she said to keep repositioning and we would check again. That was when she first mentioned tort to me.
At his 4 month appointment, it was clear he had tort. So, we got an evaluation with our local early intervention program and they diagnosed him with torticollis and we started physical therapy with him. From the beginning, he had a full range of motion, but tilted. So, our exercises focused on getting his left ear toward his left shoulder. He was able to do it, although he fought it. He was able to be stretched easily in his sleep though.
At 7 months, we determined after a visit to the neurologist that his plagiocephaly (flat head) wasn't going to get better because of the tort, so we started cranial remolding therapy...aka a helmet! It really wasn't that bad and he adjusted quickly.
I decided in August at 8 months, to call a pediatric ophthalmologist to get his eyes checked. I had read more about ocular torticollis and though it was worth getting him checked out. The appointment was made for October. We continued to do PT and the helmet and then met with the ophthalmologist in October.
Suddenly, the rug was pulled out when it was determined that yes, he probably did have ocular torticollis. Which means he has a form of strabismus (lazy eye) called 4th Cranial Nerve Palsy. The only fix....surgery. Ugh.
He was scheduled for surgery in January 2011 at 13 months, but he was too sick with cold/cough to do it, so we rescheduled for April 2011. He will be 16 months. The prognosis is good though and we are hoping to just have to have one surgery and call it a day!
Some clues that tort is ocular and not muscular -
- it appeared around the time when the eyes begin to work together 6-8 weeks
- full range of motion
- able to stretch fully without any tightness when asleep
- when one eye is patched, the head is midline (this should only be done at the direction of an ophthalmologist)
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