Saturday, January 10, 2015

Torticollis No More!

I've talked and shared a lot about Evan's helmet journey on here, but not quite as much about his physical therapy journey and our fight against torticollis. It's funny, but Ed and I never noticed anything was wrong with Evan besides his flat spot, until we started PT. I wasn't even positive that the physical therapist would find anything wrong, because Evan just seemed perfect in my eyes. 

Instead, she immediately diagnosed him with torticollis and hypertonia, meaning that he had very tight muscles on his left side, in his neck and back, and overall very high muscle tone, which isn't a good thing like it might sound. Evan looked really strong but actually couldn't relax his body. Our PT actually revealed to me in our last session, after sharing the good news that we were basically done, that there were definite points where she and her colleagues were quite worried about Evan and just how severe his hypertonia was, in particular. 

And, yesterday I started looking back through our early Evan photos and was shocked by what I saw. Somehow, even though I've looked at these pictures countless times, I never saw it until now. 

Besides looking incredibly cute, almost every photo had Evan's head bent to his left. And, full body pictures more often than not showed him bent to his left side, almost like the letter C. It's so easy to look back now and see how incredibly tight those neck, back, and side muscles were - they literally pulled his little body and kept him from straightening. No wonder he ended up with a flat spot!

It's hard to imagine how Ed and I missed this, other than the fact that we were primarily concerned with keeping Evan alive (and were super sleep deprived). We did notice that he always turned the same way when he slept and was in the carseat (because one of his eyes would swell up as he slept since it was on the bottom and getting more blood flow), but we never picked up on the tilt. 

To fight this, we had to do a lot: exercises and stretches multiples times a day that would make our poor little boy cry in pain, keep him off his back as much as possible and do tummy time basically any time that he was awake, deep pressure massage on his back, and lots and lots of activities to get him to look to his right and reach for things with his left - anything to stretch those muscles. 

Now though, it makes me so happy to see him, sitting confidently and straight up, able to move his little body however he wants without being limited by his torticollis. I'm so proud of him and the progress he's made! And, only 2-3 more months and we'll be able to say goodbye to our helmet and hello to life as a normal little boy.

1 comment:

  1. Hi, I found this post after searching for hypertonia and torticollis. My 6 month old son has been hypertonic since birth and was just diagnosediagnosed with torticollis. We are in OT and PT. I'd love to talk to you, since you have experience. It's fantastic to read your little one no longer has torticollis! Oh, I'm a teacher, as well :-)