DEAR ERI COMMUNITY:
Hello, I am working with a child with Goldenhar Syndrome and significant right torticollis. I have been working with him for almost a year, and we have had phases of the neck alignment improving, but seems to have plateaued more recently. He is now 16 months old, and quite resistant to any stretching, and most handling. His family is great and tries to incorporate what they can into the daily routine, but of course his tolerance for this is poor, as he’d prefer to be up walking. His passive range of motion is pretty good, with his primary limitation being rotation. But he consistently maintains a 45 degree head tilt during play. He has a TOT collar which helps quite a bit, but limits his rotation, and encourages him to rotate to the left. In addition, once it’s removed, his tilt becomes even worse. We have tried kinesiotaping, but his skin is very sensitive and he did not tolerate it.
I would love any suggestions/treatment ideas people may have for working with a child of this age with torticollis. In the past, I have been able to discharge most of my kids with torticollis around a year. I feel like we have tried everything with this little guy, but we just aren’t having a lot of success.