Our Experience with Torticollis-Part 1

Buddy at 3 months with obvious tilt to the left. This is how it looked all the time.

When our son was born I thought, like any mother, that he was the most beautiful, perfect baby in the world. I was right. He had all 10 finger and 10 toes, was alert, and rarely cried. He slept wonderfully from the beginning and nursed easily after the 4th day(the first four days are an entirely different story).  After a few weeks I began to notice that he always kept his head tilted to the left. My father pointed it out a few times, but I brushed it off as just a baby without developed neck muscles and head control. We also noticed he used his left hand a lot, but I thought he would just be a leftie. It was so cute! My husband took him to his 3 month check-up and the pediatrician let us know it was not normal and gave us some stretches to do at home. A couple weeks passed and he didn’t seem better so I got on the internet and googled “baby head tilting”. Torticollis pages filled the screen. I clicked on the first one that seemed credible and my eyes were now wide open. Of course he had torticollis! I called the pediatrician the next day and they worked us in. She looked at him and said she was referring us to physical therapy and she was glad we didn’t wait until his next check-up. We received a phone call within a few days from PT and were scheduled for the next week.

Buddy at 3 months with obvious tilt to the left. This is how it looked all the time.

Buddy at 3 months with obvious tilt to the left. This is how it looked all the time.

His first PT visit went well. There were some questions about my pregnancy and delivery. I didn’t have any complications with either. He was not breech and I didn’t have a long delivery which are some possible causes of tort. The only explanation we could come up with was that he was cramped into my small frame, even though he was an average 7.7 lbs. She felt his neck to see if she could feel the tightened muscles. On a side note, Buddy had muscular torticollis. Vision, hearing, and neurological problems are some other potential causes. We felt certain, as did the pt, that he had muscular.  She checked his rotation, which was good, and took some measurements of his skull to check for plagiocephaly. Fortunately his skull was still symmetrical. Many babies with stubborn torticollis will go on to develop plagiocephaly and potentially need a helmet. She pointed out that his cute left-handedness was simply because he couldn’t see his right side due to the tilt and was not as aware of it as his left. It’s not normal, and not good, for a baby to favor a side so early.  She did then some stretches and showed us some exercises and activities to use at home. We left feeling very positive that we would have this resolved in no time.  Although we were very upset that he had a problem we still felt very grateful that it was something so minor and easily treated.We set up a weekly schedule for PT.

The exercises at home were easy to do and we tried to do them whenever we had something else to do, like change a diaper. This was an easy way to remember to do them. We saw great improvement over the next couple of weeks. Two weeks later the PT said that if he continued to do this well we would probably only need to come a few more months and could soon go to visits every other week. We were so excited! Our bubble was burst the next week when he had obviously regressed. We continued going to our weekly visits and about a month later the PT pointed out that his skull was now misshapen. I had noticed but didn’t think it was too bad, and I think I was a little bit in denial. She recommended having a scan done to check the measurements and see if he needed a helmet. I was really upset at this news. We scheduled a scan and checked with our insurance to see what, and if, it would be covered. Fortunately it would be if it was needed. I scoured the internet for information about helmets. There is a lot of conflicting information out there. Some people, and doctors, think most cases of positional plagiocephaly will resolve on their own with time. The parents who chose to go ahead with it seemed to have no regrets and the biggest complaint was cost and stinkiness. I decided if he needed it we would go forward. We went to have his scan done and had some more questions about pregnancy and labor. He had a little cap put on his head to push his hair down and was placed in a small three side machine that scanned his head. It was very quick and he didn’t mind at all. The orthotist looked it over right then while we were in the room. He said that his skull measurements were outside of the range to be considered normal, but not yet to the point of recommending a helmet. We were so relieved. He gave us some helpful tips to keep him off his back and how to minimize pressure to his flat spot when he was on his back. He wanted us to come back in one month for a rescan. Fortunately Buddy had just started rolling over to sleep the week before. This might scare some parents but I knew there were no blankets, stuffed animals, or a crib bumper that might increase his chance of SIDS. Frankly, I was happy that he would have at least 8 hours of time off his back. We continued our weekly PT visits and followed-up one month later. His scan showed that he was now in the normal range and was even more symmetrical than most! We were so, so relieved.