Torticollis Update

So, Susannah’s still in biweekly (every other week) physical therapy for her torticollis. The PT observes her in several different positions as Susannah plays with different toys — lying on her back, resting on her stomach, belly crawling, supported on her hands & knees (because she doesn’t stay up like this very long on her own!), sitting, pulling up to her knees, and supported standing. Right now, Susannah tends to have great positioning when she is sitting & supported standing – a barely perceptible tilt, if any. When she plays on her back and on her tummy, she occasionally still “drifts” to what we call her “comfort position” which is now about a 5-degree tilt.

Then the PT puts her through her paces – stretches that tilt and twist her neck, stretches that reinforce her natural inclination to “head righting” if she’s held on an angle or perpendicular, stretches that strengthen her trunk and abdominal muscles. She also massages Susannah’s neck and does occiput manipulation, which very gently pulls the bones at the back and side of her skull into position (because one of the long-term effects of untreated torticollis can be misshapen heads, apparently – so it’s important to gently train those bones into the right spots while they are still forming and hardening).

Each time we visit, I update the PT on any new milestones Susannah has achieved. Each time she advances, the PT likes to hear whether she’s working on her physical skills symmetrically (ie, when she started belly-crawling, I had to pay attention to whether she was only pushing off with one knee and dragging the other leg or if she was only pulling the weight of her body forward with one arm and letting the other be slack). Fortunately, Susannah has never shown this tendency of some tort kids to have asymmetrical development.

As it stands right now, we have no firm plan for discontinuing therapy. However, at this week’s appointment (9/22) our therapist mentioned that we might look into using a TOT collar for a short time to “finish up her therapy.” While I hate the idea of using a neck brace on her – my poor baby! – I’m excited about the prospect that it would be enough to help her ‘graduate’ from therapy a little quicker. It’s similar to those helmets used for plagiocephaly, in that it’s only for a prescribed amount of time per day (in Susannah’s case, the PT said, it would be no more than 2 hrs total in a day). And for kids who have a slight, but persistent, remaining tilt, it provides a gentle “cue” when they tilt their head and feel the plastic tubing to straighten up. I’m supposed to watch Susannah carefully over the next two weeks and report on how frequently throughout the day she tilts, and we’ll discuss at our next visit. It should be interesting to see what happens.

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MICHELLE NEBEL

I write uplifting women’s fiction woven with threads of faith, grace, and Southern hospitality. My blog is where I share a glimpse of my life, and I hope you’ll find the thoughts here encouraging!

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