Torticollis - Raleigh,NC

Updated on October 10, 2008
B.L. asks from Raleigh, NC
12 answers

Does anyone else have a child with Torticollis? My son has congenital torticollis and we have gone to a physical therapist, which didn't really work, and now we have been going to a cranialsacral therapist, which has helped a lot. He still has a small tilt, but it is not nearly as bad as it used to be. I am a little worried, because his jaw on one side looks a little smaller than the other (like one cheek is a little fuller than the other). Everyone keeps telling me that when this is fully corrected, everythiing will fall back into place, but he just turned a year old a few weeks ago, and I just want to make sure I am on the right track. I have heard of people putting those helmets on their children, and I have also heard of children having surgery to correct the short muscle. The only thing the Pediatrician has offered was PT, but I feel like this is taking forever! My son has normal head rotation, and has met all his milestones, but still continues to have a little tilt. Any feedback would be helpful! Thanks!

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K.W.

answers from Asheville on

You're on the right track with craniosacral therapy and just be patient bacause the body needs time to heal itself!! My daughter had torticollis when she was an infant and now she's fine!!

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L.M.

answers from Lexington on

You are right it is a long process, but it is great that your son has full range of motion and is on target with all his milestones! The asymmetry that you speak of in his face typically comes about from the rotation that is present combine with being positioned on his back as an infant when the skull plates have not yet fused. There is an asymmetrical flattening on the back of the head and a bulge on the front.

The helmeting that you speak of is the only treatment that I know of that will correct this. However, there is an age limit on the effectiveness based on the fusion of the skull plates. I think around 15-18 months. There is a Physical Therapist at the Cleveland Clinic that is an expert in Torticollis. I would try contacting them either via internet or phone and they should be able to point you in the right direction. Don't give up on all PTs just because of one experience. If the facial asymmetry really bothers you don't delay. Good luck, I hope this helps!

P.S. I worked as a pediatric physical therapist until having me own kids six years ago. Sorry I am a little short on contact info--it has been a while.

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V.C.

answers from Louisville on

B., I found a few things that might be of interest to you. Remember above all else, to do what is best for you and your family.

http://www.keepkidshealthy.com/welcome/commonproblems/tor...
Scroll ALL The way down there are some GREAT sites that might be of interest to you. :)

Here is another site with more info:

http://children.webmd.com/tc/congenital-torticollis-topic...

How is it treated?
Congenital torticollis is treated through exercises that stretch your baby's neck. Your health professional or a physical therapist will teach you how to do them with your baby, and then you will stretch your baby's neck on your own several times a day.

You can also play with your baby in ways that stretch the neck. Placing toys and other objects in positions where your baby has to turn his or her head to see them helps stretch the muscle.

If your baby does not improve after 2 to 3 months of stretching, contact your health professional. There may be another problem, or surgery may be necessary to stretch or lengthen the neck muscle.

The lump in the muscle usually goes away on its own.

If the congenital torticollis is not caused by a shortened neck muscle but by a cervical spine abnormality, the spine abnormality is sometimes treatable.

Patience some time is so hard especially when we want things to be corrected overnight or soon....

Patience is going to be the best thing from what I have read at least at this point. Do the PT and work with him per the PT
You should soon see some positive results...

Remember too that this is a temporary thing...

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P.F.

answers from Louisville on

My daughter also had this. We did do the molding helmet since the crown of her head had grown bigger on one side. The helmet worked great, she didn't care anything about it, left it on without issue once she got use to it. She is now 9 and hasn't had any other issues except she turns her head and looks sideways to watch tv when she is tired. She has great eyesite and the doctors can't find anything wrong. They say it is just where she feels comfortable and will grow out of it, once she pays attention to it. We to did physical therapy, the first one didn't help at all but the second one was wonderful! Good Luck!

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T.B.

answers from Lexington on

Yes. My son has tort and mild plagiocephaly. We've been through what you've described. Our ped didn't check to see if his tort was getting better and is has caused some facial assymetry. The helmets are for plagiocephaly (also called flat head syndrome. It can be caused by babies who either sleep on the same spot on in the bed or spend too much time in bouncies, carseats and swings. It can also be caused by torticollis.) Helmets do not help with torticollis -- they help with molding the shape of the head when it is flat or little assymetrical.

We made an appt with the plagio clinic (which also deals with tort) at Cincinnati's Childrens Hospital 1-800-344-2462. They were so amazing and informative and helped us through the process. Torticollis should get better within 3 months with proper PT in many cases. If not, then you need to seek additional help. In our case, the PT exercise (initially) I was told to do at home was no where near enough and didn't do much good. We found help (without our ped) and started going to Cardinal Hill for PT. First STeps is another option too for all children under 3 - it just took awhile to get into. My son is about to have the muscle release surgery at Cinci pretty soon here. From what I've been told, most kids respond with therapy or with a tot collar. But, tort that goes untreated or unproperly treated can cause assymetric growth in the face, eye and jaw problems. (Unfortunately we know this first hand.) Surgery is last resort. Feel free to contact me if you have any other questions.

Best wishes,
T.
[email protected]____.com

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S.P.

answers from Charlotte on

I would highly recomend that you seek out a Physical Therapist that has trained with John F. Barnes in Myofascial Release. You can find information through www.myofascialrelease.com for some of the therapists listings. If there is not one in your area listed there I would suggest starting in the phone book under Physical therapists and just calling and asking. It is the most effective form of manual therapy/soft tissue work available. Best of luck,
S. P. PT
www.ATouchAbovePhysicalTherapy.com

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V.C.

answers from Wheeling on

Could maybe a saccro-occipital chiropractor help? Might be about the same as the therapy you're using. He IS still a 'baby', and very pliable. If the therapy you're using is 'working well', ask THEM what's the prognosis (outlook) with continued treatment. Don't worry too much, OK?

Blessings 2 U.

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B.W.

answers from Charlotte on

Hi B..
My son was dx with torticollis back in '92. For me it felt like a nightmare. He had seizures due to meningitis at birth and the torticollis felt like the weight of the world. We were only offered PT and I did not like the way the therapist handled things. My husband and I both felt she was extremely rough with children. We eventually took Alex out of her care and continued therapy on our own. Withing a couple of months of doing it on our own he was fine. No more therapy, no problems. Everything turned out fine. Patience is the key with torticollis.

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A.M.

answers from Memphis on

I have no personal experience with torticollis but some with cranialsacral therapy and chiropractic. It sounds like you are on the right track! I would ask my cranialsacral therapist to recommend a good chiropractor. PT may also be helpful. A PT will work with you and your son and at his age you may be eligible to have someone come to your home for therapy rather than having to make another trip out. Also the first suggestion- myofascial release- my understanding is that cranialsacral therapy is a form of myofascial release. Rolfing or structural integration is yet another form. All of these types of therapies deal with the underlying problem, rather than only attempting to correct the symptom. When the problem is corrected, the symptom resolves on it's own.

HTH

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S.M.

answers from Nashville on

Hi B.,
My daughter just got diagnosed with torticollis also. She'll be 4 months old on Oct. 12. We've been to 1 PT session so far and have been doing the stretches at home. We go back to PT next week. Do you know the degree of your son's tilt? Carly's is about 25 degrees. Her head was getting pretty flat on one side which has made her ears look uneven. I think that part is getting better now as she's able to hold her head up more and have more control over her head movements in general.

Like you though, I'm more worried about her jaw. We noticed as soon as she was born that one side of her jaw looked "dented in." One cheek is also fuller than the other one. We are doing a CT scan at Vanderbilt Children's Hospital on the 21st to make sure there are no bone abnormalities. Did you do this? Then we'll see the cranio-facial specialist there to evaluate everything. I haven't been told whether or not the jaw will correct itself once the tort is "cured" or if it will always be that way. Do you know?

You can e-mail me at [email protected]____.com if it's easier. Thanks!

S.

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S.S.

answers from Nashville on

B., talk to an occupational therapist, just a consult. It's worth your time on this.........they understand developmental disabilities on a much grander scale.

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M.T.

answers from Raleigh on

My 10 year old grandson had torticollis when he was born and now you would never know. His mom was, at the time of his birth, getting her PTA certification therefore she performed PT on him. When he was sleeping she would move his head to the other side (of course not all the time but when she could).

M.

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