Torticallis refers to head tilt or head asymmetry. In Sammy's case, his head tilts to the left. It has significantly improved, and most people don't notice it unless I point it out in a picture. It looks like he is posing for the picture, with his head cocked in a coy, cute way.

We presume that he developed the torticallis from the months on the vent, most probably from the high frequency vent on which he spent almost two months. I am a little surprised that he developed it because his nurses were so very faithful about changing his position every few hours. Unfortunately, the HF vent made him turn his head to such an extreme angle wherein his ear was flat to the sheet, and there was no flexibility for movement.

The good thing about the torticallis, besides making him look extra cute in his pictures, is that it qualified us for in-home physical therapy twice a week. We had a P.T. work with Sam for a year and a half. She also left information on stretches and therapeutic games we could play with Sam to get him to straighten his head. They were simple things like bending his head gently down, as if to press ear against shoulder. We did this on both sides of his head. I also had to breastfeed (and then bottle feed) with him in the opposite way than I was comfortable so that his head would have to learn to tilt to the right.

The games were simple too, things like presenting a toy or rattle or music on his RIGHT side, so that he would have to move his head to it. What also really helped was the use of an "exersaucer." It really helped strengthen his upper body and neck muscles. We were supposed to put him in it facing to the left, so that he would have to watch us or watch something on T.V. by turning his head to the right. We would only leave him in the exersaucer for short periods of time so that his muscles would develop properly.

The torticallis has signifiantly improved, and you probably wouldn't notice it if you were to see Sammy in action today. I rarely notice it except for some pictures. Our pediatrican says it may never completely go away (until, I suppose, he is old enough to be aware of it and self-correct his posture).

When he was younger, and weaker it was much more pronounced. In fact, it was my way of determining how sick he was. When Sammy would get sick (which he did very often due to his immunodeficiency) his torticallis would become much more obvious. At one point, he couldn't even hold his head up; his left ear was almost resting on his shoulder. When he got better his head would be able to hold his head vertical and in midline.


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