Diagnosis Discussion- Torticollis

Torticollis is one of the most common diagnoses I see working in outpatient pediatrics among patients under 6 months old.

Torticollis can sound like a big scary word, so here’s some info on this diagnosis:

Torticollis can mean a few different things.  But basically it is a twisting of the neck, where one’s head is tilted one way and rotated the other way, usually because of a tight neck muscle (sternocleidomastoid).

I gathered most of the following info from babycenter.com

  • The patients that I see usually have congenital torticollis, which means they were born with the neck condition, usually because of position they were stuck in a little too long in utero.
  • Congenital torticollis can also be caused by “abnormalities in the bones of the neck (the cervical vertebrae). The bones may be abnormally formed, stuck together (fused), or a combination of both. This condition is known as Klippel-Feil syndrome.
  • Infants can also have acquired torticollis which is torticollis that develops after birth.
  • Babies with torticollis may also develop positional plagiocephaly (asymmetrical head shape) because they’ll often sleep with their head turned to the side.

If torticollis isn’t addressed early on (as early as 2 months old), patients tend to get (plagiocephaly) a flat spot on the side of their head that they’re always turning to.  If the flatness continues to progress, it can affect a child’s facial symmetry.

  • larger forehead on 1 side
  • 1 ear pushed forward
  • Eye and cheek on flat side tends to look larger

If the head shape does not begin to resolve by the time the child is about 5 months old, a physician may recommend a helmet to help improve the child’s head shape.  In my experience, insurance companies have been more willing to approve the helmet if the child has facial asymmetries but not if they only have a flat spot on the back of their head.

Some sample helmets I found on google images:

       

So now if you see a baby with one of these cute helmets, you’ll know why they probably have one 🙂

Remember, the helmet’s purpose is purely cosmetic to just help to correct head shape.  Having a helmet but not addressing the cause of the changing head shape will not fix the problem! 

The reason I bring up torticollis as one of my first diagnosis discussion posts is because almost all my parents tell me that they wish they knew about this condition when their kids were born so they could have noticed it and taken care of it sooner.

Some common questions:

How do I know if my child may have torticollis?

  • if your child is always looking to one side (ie sleeping with their head only to one side, even when you turn them the other way, or always looking in 1 direction when they’re awake).
  • if your child’s head is always tilted in 1 direction
  • your child may start to have a flatter spot on back/side of their head

What to do if you suspect it?

  • go talk to your pediatrician to see what the next best step should be (it’ll likely be to go get a physical therapy evaluation)
  • start arranging your child’s environment to encourage them to look in the opposite direction.  You can move their crib around, you can put all the interesting toys on the other side, and add a mirror to the side you want them to start turning to.

Where do I go to get a helmet?

  • Your insurance company will likely have a company in their network.  Sometimes they have no idea who makes a torticollis helmet.  In that case, tell them you need someone who is an orthotist or a company that makes prosthetics and orthotics.

What can I do to prevent head flattening (plagiocephaly)?

  • Tummy time!!!  Refer to my past post about tummy time.
  • Any time off the back of their head is important to improving or maintaining appropriate head shape.

What are the negative affects of an uncorrected torticollis?  Here are a few…

  • A helmet will only help the head shape, but if the head positioning isn’t corrected, you can also have the following effects:
  • Vision can be affected because your child may not be fully able to track objects with their head only turned to one side.  As a result they can have delayed tracking, which can delay their interaction with objects in their environment.
  • Fine motor skills and hand use can be affected as babies tend to use the hand they see more when their head is turned.  This can delay fine motor skills as they will not be using both hands equally.
  • Gross motor skills can be delayed. These include progressing tummy time, as 1 side of the neck will be weak as a result of a baby always looking in 1 direction.  This can lead to a delay in the milestones following tummy time such as rolling and crawling.
  • Balance can be affected since our balance centers depend on holding our head in the middle, and if a child is always tilted, the body will begin to think that the tilted position is the correct position.  A delay in developing age-appropriate balance can also lead to a delay in gross motor milestones.

What will a physical therapist do if I take my child for an evaluation and treatment?

  • A PT will evaluate your child to determine the cause of the head position preference (why they prefer to look in one direction or why they have their head tilted most of the time).
  • They will work on stretching your baby’s neck if there is muscle tightness present
  • They will work on strengthening your baby’s neck muscles, since 1 side tends to be weaker
  • They will work on overall head and trunk control to improve your child’s head and trunk alignment
  • They will work on progressing milestones if the position preference is causing a delay

Any parents out there have experiences with torticollis you’d like to share?  Any therapists want to add any other info they think parents should know?



Categories: Child Development, Diagnosis Discussion

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18 replies

  1. Hi, my daughter was born with Torticollis and did physical therapy for the first six months. She is now 7 years old and (I think b/c she is growing so tall so fast!) I am seeing her neck revert to her old tilted position. Now that I’m paying attention to it again, I’m realizing that her pushed-forward ear is still not even with the other one. Is there any way a child can wear a helmet to resolve this, or is it too late? Thank you.

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    • Hi Kay,
      Thank you for your question. usually after 1 year of age the bones in the skull are fused that allow for a helmet to change the shape of a child’s head.
      I would recommend finding a craniofacial specialist in your area to further evaluate your daughter to see if 1- there is a need for further evaluation 2- what treatment options would be available.

      Usually having 1 ear more forward than the other is 1 sign of a plagiocephaly (name for how the skull is shaped if 1 part of it is pushed forward). Other things you can ask the craniofacial specialist about is to look at her eyes and jaw, because plagiocephaly can also lead to asymmetry in jaw and eye bones.

      In regards to her tilted position, I would just double check with your pediatrician to make sure there are no ear infections or neck joint issues that may be leading to the tilt before you try to encourage her to hold her head in the middle or before you try any stretches.

      Hope that is helpful, let me know if you have any other questions!
      -Natalie

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  2. Hi Natalie,
    My daughter was born with torticollis, but I was not referred to physical therapy until this past month. Until now the nurse practitioner had simply said that she had some tight muscles and to massage her neck. My daughter has full range of motion when looking to the left, but is somewhat limited when looking to the right.
    My husband and I have tried to massage and stretch her muscles, and tried to get her to look to the right as much as possible. While I feel certain that her torticollis has not gotten worse, improvement has been limited.
    She is now 11 months old. At her last appointment, the pediatrician noticed some asymmetry in her ears although no flatness of any part of her head. The pediatrician was very concerned and made certain that my daughter is seen by a PT as soon as possible.
    Since my daughter was referred to PT so late, my concern is whether there is sufficient time for physical therapy to correct the problem? What happens if the problem is not corrected? Will there be additional asymmetry in her head or face as she grows?
    Thank you!

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    • Hi Mary, it’s not too late for physical therapy to correct the tightness since that is different from correcting skull shape. Stretching at that age is just a little harder since kiddos are more mobile and resistant to stretching, but it’s still possible. The therapist will most likely look at your child’s neck and spine alignment to make sure that the muscle tightness is the reason for her decreased motion to look to her right.

      Regarding the possible asymmetry, the PT can give you some idea on the degree of asymmetry, but a craniofacial specialist will be able to give you a better idea of the degree of asymmetry and if it can be fixed. Here in southern California we have a place we refer a number of patients to where they do a scan of the head shape to determine degree of asymmetry. And some will do a reshaping helmet up until 18mos depending on the case. Here is their website so you can see what they do and see If there is something similar near you. http://www.cranialtech.com.
      I would also look up a pediatric craniofacial specialist in your area as well since they specifically work on asymmetry.

      Hope this helps! Thank you for your comment and let me know if you have any other questions. -Natalie

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  3. Hi, Natalie. My baby was diagnosed with a mild form of torticollitis – she had some preference to her left side and the muscles were a bit stiff. And I was told her left side was weak. We did some PT, increased tummy time, she is on the floor most of the time. She is 35 weeks old, she can seat for a month now, she i sstable and I think her neck is straight. I am concerned because she`s not crawling or trying to stand up in her crib. I don`t know if that`s because of weak muscles or just her temper. Are there any exercises I can do to stimulate her? She has a bundgee jumper and I put her there 2-3 times a day for 10-15 min. I don`t live in the US and here they aren`t any PT. The one that worked with us the last time when she was 7 months old showed me how to make her stand up from a squat but my baby doesn`t like this and I am afraid I am going to hurt her. Thank ypu for your time.

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  4. Hi! My 2 month old was recently diagnosed with torticollis. He tends to prefer his left side and his head is mildly flat on the left side. I was given some exercises but am a little confused, after reading different torticollis stories online. Should I be encouraging him to look to his right side since he prefers left? And sleep on his right side? Hope I am not making it worse. Thank you!

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    • Hi Marybeth, thanks for reading my blog! Regarding your son, when they diagnosed him with torticollis, did they refer you to pediatric physical therapist so they could help you determine what exercises/activities were best to treat the torticollis? regarding which way you should have him look, if he prefers to look to his left, then you should encourage looking to the right more so that he is looking in both directions equally. Some strategies that I recommend are placing more interesting items on his less preferred side when he is sitting/on his back/ on his tummy. If he is in a crib already, I would position him in the crib so that the door is on the less preferred side so he is encouraged to look that way. When you are carrying him, place him on the side that encourages him to turn to his less preferred side to look at your face. I can’t comment about specific exercises since you would have to see a physical therapist so they can determine what exercises are best. Hope that helps, let me know if you have any questions!

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  5. My son was diagnosed with this at 8week! He hardly uses his hands and is delayed in his motor skills! They was surposed to refer him to physo but 10weeks on hear nothing! Been to see the doctors and they are now saying its to late to do anything now am at my wits end with it all!i want to help my son and no one is giving my the right information on how to go about it! They even commented and said his head wasn’t sermetrical I just don’t understand why they aren’t doing anything 😦

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  6. My son was diagnosed with this at 8week! He hardly uses his hands and is delayed in his motor skills! They was surposed to refer him to physo but 10weeks on hear nothing! Been to see the doctors and they are now saying its to late to do anything now am at my wits end with it all!i want to help my son and no one is giving my the right information on how to go about it! They even commented and said his head wasn’t sermetrical I just don’t understand why they aren’t doing anything 😦 any advice would be greatful

    Like

    • Hi Leah, I’m sorry it’s been challenging trying to get treatment. If your son is only is still under 6 months then it is still treatable. To manage the head shape, I would activities to keep him off the back of his head as much as possible, and to have him only lie on his back during sleeping and naps and occasional breaks during the day. The rest of the time he should be on his tummy or in sitting or supported somehow without lying down. I would do activities to encourage him to rotate his head in both directions when he is in all positions (sitting, on his tummy, lying on his back, or in your arms). If he prefers to look more at one side then encourage him to look more to the other side. Have you been able to find a pediatric therapist at all? Let me know if those tips help or if you have any more questions, and I hope your son continues to make progress!

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  7. I take care of a child, age 20 months old. He was diagnosed with Torticollis at age 3 months. He ‘graduated’ from PT after 9 months. He still has it. His head tilts quite a bit to the right. He has poor balance and stumbles and falls a hundred times a day. He’s been walking for 7 months. The therapist told them that when’s he’s upset, or tired, or learning a new skill that they will notice it more. They accept this and are ok with it. I on the other hand question it. If it was ‘corrected’ then why would he still be ’tilted’ and why would it be worse at different times?? To me, that says he still needs help. Of course, I am not the parent. My hands are tied. If I were, I would be addressing this until his torticollis was ‘corrected’. What advice can I ‘gently’ give the parents? They don’t seem to see the problem as serious. But then, I have him 50 hours a week, so I spend more time with him and realize how bad it is.

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    • Hi Lyn, thanks for stopping by my site! There could be a number of reasons why he is stumbling a lot. If he did still have Torticollis at 20 months, then it would be pretty challenging to stretch out those tight muscles and I wouldn’t recommend trying to stretch him. The most you could probably do at this point is encourage him to actively tilt his head and rotate his head in the non preferred direction if you do think he does tilt and rotate more to one side than the other. You can do this with having him reach up for a toy in sitting in a high chair or standing and place the toy/interesting object in the direction that he least prefers to turn towards.

      You can ask the parents some questions to see if they want to follow up about his head position. The first one would be to ask if he has gone to a PT recently to have his neck mobility checked to make sure both sides are even. The other is to ask if he has had his vision checked recently since he is falling a lot. Hope this helps! Let me know if you have any other questions and thanks again for reading my blog!

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  8. Hi Natalie,

    Love your article! My son was diagnosed with torticollis at 5 months old and has been seeing a physical therapist and a chiropractor since (now 9 months). I am concerned because he still has the tilt (to the left) and I am unsure of what steps to take next. We do the stretching and strengthening exercises of the muscles but nothing seems to be improving. Any suggestions?

    Like

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