Look to the Left, L.J.!

Plagiocephaly + Torticollis. There’s two big words that you don’t hear every day. I briefly mentioned physical therapy in L.J.’s 4-month post and said I would share more about it in a later post. Well, here we go…

At his 2-month appointment L.J. was diagnosed with torticollis. That means that he has a short muscle on one side of his neck (left in his case) that causes him to turn his head in one direction. If you go back and look at pictures of him, you will notice that most of the time his head is turned to the right and tilted slightly upwards. This positioning is caused by the torticollis.

The pediatrician said that it is not uncommon and it was caused by cramped quarters in utero. She gave us a pamphlet of exercises to do with L.J., which I’m fairly certain was written in a now-extinct dialect of ancient Greek. Fortunately, we have a family friend who is a physical therapist and she graciously translated the instructions and showed us how to do the exercises.

At three months, Mike and I noticed that L.J.’s head was getting increasingly flatter in the back and was also starting to look rather misshapen. It didn’t look “normal.” He wasn’t scheduled for a doctor’s appointment until four months, but I called the pediatrician and they said to bring him in for a quick check.

At that appointment he was diagnosed with plagiocephaly, which is a scary-sounding term that simply means “flat head.” In L.J.’s case, he had a flat spot on the right side of his head that was caused by the torticollis – he was always putting pressure on the same spot because of limited range of motion. The pediatrician said that it was bad enough to warrant a referral to the orthotics and physical therapy department at Children’s.

Over at Children’s, they did a head scan. The scan itself is harmless and is sort of like Xeroxing a baby’s head. The scan then renders a 3-D model of the head on a computer, and from there the technician can do all sorts of measurements and evaluations. It’s really neat technology!

They looked at several things, but the biggest was the ratio difference on both sides of his head. See below:

In brief, they want the two lines that form the ‘X’ (Diag1 and Diag2) to be less than 6 mm difference in length. L.J. was at a 12. We left the appointment with a 50/50 shot at needing a helmet.

We also did a physical therapy session to evaluate the severity of his torticollis, as that has a direct correlation to the likelihood of L.J. needing a helmet. The good news was that his torticollis was relatively mild and the physical therapist felt that continuing some at-home exercises would make a big difference.

The exercises consisted of getting him to “Look to the Left, L.J.!” as much as we possibly could. That became our mantra all month long. Toys on his left, holding him with his head to the left, laying in crib so he looks out at the room on his left side, etc.

At four months, we had a follow up appointment to see if we had made any progress. It appeared to us that the flat spot was improving and his torticollis was improving. We were 50% correct.

A new head scan showed that his head had gotten bigger pretty evenly all the way around (which is why it looked like it was getting better to us). In other words, his ‘X’ ratio was the same and had not improved. His head is basically growing assuming that it’s supposed to stay flat on the right side. Not good news.

However, his torticollis has improved significantly! He can now turn his head 25 degrees farther to the left than he could four weeks ago. We have noticed an improvement at home – for example, he now sleeps with his head turned left – so we were thrilled with this news.

As a result of the torticollis improvements, we earned four more weeks to see if his flat spot gets any better. We currently stand at a 60/40 chance for a helmet. If it does not improve within that time, he will be measured for a craniofacial helmet, which looks like this:

Most likely, he would wear the helmet full-time for several months and then wear it at night only for a few more months.

Our mantra over the next several weeks will continue to be, “Look to the Left, L.J.!” in hopes that he can make enough improvement to avoid needing a helmet.

And if he does need a helmet? No big deal. Mike and I aren’t concerned about it at all. There are far worse problems we could be dealing with than a slightly misshapen head. I described it to my mom as, “like braces, only slightly more visible.”