Torticollis Overview

This photo was taken in Bismarck over Labor Day weekend, but I thought it was worth sharing... even if it is two months overdue!

Anyway, I realized I haven't blogged at all about an issue that we've been working on with Seth since his four month well child checkup. He was diagnosed with Torticollis and Plagiocephaly. Torticollis is a tightening of the sternocleidomastoid muscle (SCM), which then causes a persistent head tilt:

The muscle pulls the baby's head to the shoulder, and then turns it so the chin is facing the opposite side. For Seth, his torticollis is on the left side, so he tilts down toward his left shoulder and his chin points to his right side. This also causes some facial asymmetry... for Seth, it was pretty obvious to me when he was really little that his left eye was smaller, his left ear lower on his head, and his left cheek less full than the corresponding right features.

Torticollis is fairly common in babies (particularly firstborn males), although there is still no definitive cause. For Seth, it is probably a result of positioning in the womb, since he's had it since birth.

Initial treatment is physical therapy to stretch the muscle (as well as to strengthen the opposite side, which tends to weaken when the tort side is flexed all the time), as well as stretching at home. In any case, the persistent tilt can cause the baby to favor holding their head in a certain position... that in combination with the "Back to Sleep" campaign, can lead to Plagiocephaly, which is a flattening of the baby's head. Seth had a pretty obvious flat spot on the right side of his head... and a corresponding bulge on the left.

Physical therapy went well... Seth was SUPER good about tummy time, and I think that made a huge difference. He has loved it from the beginning, and when he figured out how to turn over, he was constantly moving onto his tummy. We were very lucky with that. Additionally, kids can avoid turning in the direction of the tort side (for Seth, that would be over his left shoulder), but Seth always had great range of motion. (Except in the beginning... Seth would nurse in the cradle hold on my left side, but would only be able to do the football hold on the right. Perhaps a more experienced mother would have noticed that it was probably an issue with his neck...) He didn't shy away from looking toward his left. The torticollis affected his development only in that he would learn a certain developmental step with his left side (since it was stronger), with the right side lagging behind. For example, he would only roll to one side at first, only crawl using one arm at first... that sort of thing. At this point, it's obvious that when he pulls himself up into a standing position, he uses his left foot first.

Physical therapy went for a couple of months. Seth showed great improvement, and every time we went we were told how great he was coming along. He was discharged in September, but at that point, the pediatric physical therapist wanted him to see a specialist, since he still had a slight tilt.

We were slightly wary of seeing a specialist, since the other treatments besides PT were botox or surgery... both with the intent of "releasing" the muscle. It was pretty confusing - why were we hearing how great he was doing (and really, 95% of tort cases resolve with PT alone) followed by the words "botox" and "surgery"? Seth seemed to be getting better and better with the current treatment. (Also, we were told that his tilt would show up more whenever he's tired, sick or teething... and he's been pretty much constantly teething since four months. The kid has seven teeth right now, and working on the eighth.)

In the end, we traveled to Gillette Children's in St. Paul last week to see Dr. Robert Wood, a craniofacial plastic surgeon with extensive experience in torticollis and plagiocephaly (in fact, I believe he was a contributor to the development of the Cranio Cap, which treats plagio). His findings were that Seth still has a slight tilt, and he turns only 75 degrees to his left (where normal is 90 degrees). He has slight plagiocephaly on his right side, but nothing that needs to be corrected. Dr. Wood prescribed two more months of PT, and then we go back December 14 to consult with him again to see if we need to discuss surgery. In the meantime, Seth got x-rays of his neck and an ophthalmologic exam to rule out any structural or ocular causes (both of which don't seem to be the case). Seth started PT again yesterday, and the therapist couldn't say enough about how much he's improved since she last saw him... so I'm optimistic. We're going to hit it hard with 3x a week (which is a LOT), and see how we do.

Also, I realize it would have been more appropriate to post a photo of Seth illustrating his tilt, and I also realize the irony of the above photo showing him slightly tilting to his right side. So, here you go... here's Seth at exactly 1 month old, which shows his torticollis:

My, how he's changed! Anyway, we'll try and do better to keep you updated on any tort news. We would appreciate prayers, as we'd very much like to avoid surgery.

P.S. I used the word "irony" something like three times in this post, and I'm still not sure I used it correctly. But you know what I meant. :)