Does anyone have any real world experience with torticollis?

Question

My 9 week old daughter was just diagnosed with torticollis. I've researched a little bit online, but was wondering if anyone can give me real world experience about what they went through. She has her first appointment to see a physical therapist in a couple days.

Answer 1

My son had torticollis. I noticed a lump in his neck when I was caressing him while he nursed when he was 6 weeks old. I took him to the doctor who diagnosed it as probable muscular torticollis.

We had an appointment with a physical therapist a few days later who showed us how to do the appropriate daily stretching/massaging exercises with him. It was pretty easy. I remember being soooo stressed out. I was concerned because of all of the horrific worst-case-scenario stuff I came across on the internet. It ended up resolving with the help of the exercises after several months. It took a little longer for the lump to disappear but he has full range of motion now (he's 13 months) and has since about a month after we started the exercises (which he hated, by the way! :o) He didn't always want to cooperate so we would have to take a break and try again later). We only had to do the exercises for a few months in our case.... but I kept an eye on his range of motion just to make sure. It's perfect.

One thing I would recommend would be to make sure you rotate your daughters head while she's laying down or in a swing, etc. as they have a tendency to develop flat spots or positional plagiocephaly much more easily. The right side of my son's head got pretty flat because of the torticollis... he always wanted to turn his head to the one side. Be sure to give lots of tummy time (our son hated tummy time!) or sling time. Sling time is just as good, if not better, for neck strength.... and also keeps them off the back of their head for longer periods during the day. I used a sling (actually a Moby wrap) a lot.

There are cushions that you can buy that cradle/mold to the head and also prevent flat spots when you do have to lay her down. I saw one at onestepahead.com..........

http://www.onestepahead.com/catalog/product.jsp?productId=424758&cmSource=Search

Oh! And my son's flat spot has pretty much resolved/rounded-out on it's own. We didn't do the helmet or the bands, etc. I just made sure to reposition him often, keep him upright, or in a sling, or on his tummy often and it looks fine now.

It's great that you caught the torticollis this early. She will undoubtedly be fine.

Best wishes!

Answer 2

:) I call it tortalini :) My good friends son has it, he is almost 9 months old. He has been doing physical therapy, and he is doing very well. They actually just had him go to an eye doctor because in some cases, the way they hold there head to the side all the time can cause the eyes to shift in the head. So when it is gone, the child still has to hold there head to the side, in order to see straight. Thankfully Caleb did not have this, and his toricollis is gone. He still holds his head to the side though, almost natural since he did for so long. I know she had to put him on his side that he did not favor so he would work his neck. If you layed him on one side, his head would lay on the floor, if you layed him on the other, his head would be all up looking all over. He is now good! This is a very fixable thing. It is not the end of the world, although wheneve ryou find out your child has anything you will worry about it. I am sure your daughter will be just fine in a jiffy, good luck!!

Answer 3

My father is a physical therapist wh specializes in pediatrics and my little sister has torticollis. At your daughter's evaluation, the physcal therapist should shw you some excersices and streches that you should elp your baby to do (such as tipping her head to the side to help stretch the tight muscles in her neck.) It is VERY important that you do all of the excersices with her as often as you can. It will also be important for her to stretch as she gets older. once she begings standing andwalking, posture an also become a big factor. You'll need to make sure that she has a good posure (does not lean to one side). My sister is now 15 and if she stops stretchin for a long time, she starts to lean to one side (always the se side) when she stands. I knw that it will be an anoyance for your daughter as she gets older to have to do this, but it will help her in the long run.

Answer 4

Hi!

My son, now 14 months, was diagnosed with tort at birth. So I can fill you in a little as to what to expect. It's great that you're getting in for pt so early!

He had a very tight muscle on one side of his neck, and the other wasn't strong enough, so his little head twisted so his face looked up and to one side, other ear to his shoulder. Not all the time, but when he slept, when he was tired ... and he pretty much refused to turn his head the other way.

Cameron was breech, and tort is common with breech babies. He had to get checked out for hip dysplasia (an ultrasound test, painless), as when you put tort together with breech, there's a high risk of hd. But no problem for us, there.

Early on, the exercises were pretty easy but frustrating. I was supposed to put him on his tummy for tummy-time, head facing the way he had troubles turning it. For a newborn, he had amazing neck strength - a week old and he could turn his head to face the comfy way again, then flat-out refuse to go back. He was supposed to lie so that interesting stuff was on the side he didn't want to look to. That didn't work at all - he just found something else to look at!

Tummy time, even if your daughter hates it, is crucial. One of the problems with tort is that they develop plagiocephaly - flat spots. Let that go too far, and she'll be wearing a helmet for six months or more. That said, I didn't push tummy time, as my son hated it. His head is just fine.

They'll also show you ways to carry her to encourage her muscles to work right.

PT took forever to get him in. There was miscommunication between them, my midwives, and my doctor. In the meantime, I researched it online. I cannot for the life of me find the website I used! We did the stretches they'll likely tell you about - gently turning his head against the tight muscle, gently tilting his head ear-to-shoulder. Those exercises are what made a huge difference!!! By the time we got to PT, he'd already started to improve.

Later, the stretches got more intense (using his body weight to help stretch his neck!). The exercises weren't bad - try to get him to turn to look this way, get him to roll this way, get him to lean this way.

Within a few months, he'd come a long way. I used to have nightmares of him having trouble in school because in order to see the blackboard he had to turn his desk to one side! Now, he's still got a bit of a 'tilt' when he's tired. If he sleeps in his stroller or car seat, he's inclined towards his old 'twist', but it's not always.

I hope that helps! Best of luck. It'll turn out okay - you've caught it early on, and with luck you won't even have to take her to pt for as long as I did.

Mel