For my first first post, I mean the first with some actual semi-interesting content, I want to share the journey with my son, who was born with a paroxysmal torticollis, which is not more than a fancy name for an asymmetrical neck position that alternates to both sides of the neck.
But…obviously this was not the first diagnosis. Before “having” the torticollis he had a “favorite position” which by one month old was already tooooo favorite so it started being called torticollis.
Wait…what? What do you mean? Does it go away? How long does it last? Does it hurt? What can I do? What can you do? What can we do? Does it require surgery?
These were just some of the thousands of questions that popped into our heads, most of them, unfortunately, don’t even have a concrete answer!
First things first.
We were, and still are, first-time parents, meaning we never dealt with any baby for more than a couple of hours a day. This alone made us even more susceptible to make mistakes. Which we made, like every other parent did.
Our son always cried a lot, he was breastfed every 30 minutes to 2 hours and sometimes stayed latched for over 1 hour! Thank god it was not my nipple, I don’t know how she could handle it.
After breastfeeding he never burped correctly and he wouldn’t stand upright without arching his back, which made the burping nearly impossible. He would also arch his back when laying down and sometimes in other positions as well. Weird right?
We all see those sweet babies in TV shows and commercials standing upright and burping like little men, so to us this wasn’t normal. His behavior was not what you usually see and expect and it didn’t feel normal, which is the most important part. We felt he was not okay.
Along with arching his back, which was initially “diagnosed” as an irritability behavior, we also noticed he was constantly turning his head to the same side when sleeping. The right side.
On our immediate next appointment with the doctor, we told her our concerns and she did some basic tests to confirm our suspicions. She told us it was probably just a favorite position but it could also be a congenital muscular torticollis, however, to confirm or deny, she redirected us to a medical rehabilitation specialist. On this evaluation, the doctor also told us he had a plagiocephaly…
Alright, one more fancy name. Good, can we graduate now?
So what is a plagiocephaly? Plagiocephaly is also called flat head syndrome, which means the head is flattened on one side of the head. In his case, it was the right side. Depending on where the flat head is it has a different name. Check on the image below for more info:
Regarding our son, he looked exactly like this:
We also realized that the plagiocephaly was due to the torticollis. It makes sense, his head is always laying on the right side so the right side of the head flattens. Pretty obvious right? Our biggest question at that time was:
“Was it our fault?”
Initially, we thought we helped it getting worse (or not improving) during that first month of life, but we didn’t think we were the origin of his problem. Our baby was sitting low since 20 weeks into pregnancy, so we extrapolated that he was not in the best position in the womb which forced him to grow like that. This theory was later on proved to be the most likely explanation, but, even if it wasn’t, there was nothing we can do to change the past. We should be focused on his improvement. On his future.
So now we have 3 things to check and treat Back Arching, Torticollis, and Plagiocephaly, it’s fine. It could be worse.
Until the appointment with the specialist, we were recommended to turn his head every time he was sleeping and to move his (or our) bed so that he had to turn to his left side to see us. Ok! We will do that!
Meanwhile, the day for the Specialist appointment finally arrived! Our son was around one month and a half. The torticollis was indeed confirmed, although not the congenital muscular torticollis, but a regular torticollis, the difference between the two, is that on the first one, a soft lump may be felt while on the latter, there’s no lump but just a shorter muscle which causes the neck to fall to the side where the shorter muscle is. In his case, it’s the left side of the neck.
Left side? But didn’t I just say he had a plagiocephaly on the right side?
He has a short muscle on the left side which makes him have a hard time turning his head to the left. When sleeping, his chin points to the right arm, forcing the right side of the head, just like this:
During the evaluation, we asked all the questions that were haunting us:
Does it go away? How long does it last?
A: Yes, it goes away! Most of the cases are fully treated between 9 months and 2 years old. The average is nearly 1 year old.
Does it hurt?
A: The general consensus is that it does not hurt. Each case is a case and each baby is different from one another. In most of the cases, the babies have no pain, it’s like when you can’t reach your toes with your fingertips, it does not hurt you not being able to do that. Your muscles just aren’t stretched enough to do it.
What can I do? What can we do?
A: You can keep doing what the family doctor told you to. Move the beds and rotate his head to the left side. There are also some pillows that might help with the plagiocephaly. The one that has the most success and the most used is the Mimos Pillow.
What can you do?
A: I can prescribe physiotherapy. If needed, there are some exercises that will be taught to you during the PT sessions. However, PT will not be prescribed right now. For now, you will do what I and the family doctor said and we will re-evaluate in 1 month time.
Does it require surgery?
A: Only in extreme cases where there are no progresses made until 1 year old.
What about the back arching? Is it related?
A: I don’t think so. The back arching can mean a lot of different things since autism until irritability behavior. We will see how he progresses. He is also being watched by his pediatrician and family doctor so there is no need to worry about it for now.
After this evaluation and during the following week we were home with a sense of emptiness. Apparently, there was not much we could do besides moving the beds and rotate his head. Can’t we really do something?
Yes, we can!
Follow the next sequence on the link below:
Baby Torticollis – Journey #2 (Yet to be posted – Will probably be released in 2 weeks.)
Note: I am not a doctor, this is my story only. Everything I wrote (including what the various doctors told us) should not be taken as medical advice. If your son or daughter is having the same or similar symptoms make sure to tell your pediatrician or family doctor about your concerns. They will know the best approach to take.