Seeking Moms with a Knowledge of "Torticollis"

Updated on April 10, 2007
B.K. asks from Barnhart, MO
14 answers

My 3 1/2 month old went to her pediatrician and was diagnosed with torticollis. I had noticed a decrease in her range of motion to the left and that her right cheek was swollen, but her pediatrician never seemed alarmed until now. She has referred us to a physical therapist and to an ortho surgeon. She has even spoken to us about helmet therapy for her misshaped head, which I don't think is that uneven. I am deadly afraid of the helmet therapy, because I know a couple of children who have had seizures since they have been helmetted. I feel so overwhelmed with all of this information. Can anyone give me some good advice?

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So What Happened?

Thank you so much for the words of encouragement. It makes me so hopeful and a little more at ease to hear the positive stories. Corinne has been evaluated by a PT and she said that she doesn't think she is that bad. She has given us some stretching exercises to do as much as possible, which Corinne hates. The therapist wants to see her every other week for just a couple of weeks, and then that should be it. I have also been repositioning her for her naps and try to do lots of tummy time. Now that her neck muscles have elongated some, Corinne doesn't fight tummy time as much. Things are looking up. Thanks again to all of you that took the time out of your busy lives to share your stories...they really helped.

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answers from Kansas City on

I am also a chiropractor and I have treated several babies with torticollis with excellent results. I also specialize in Craniosacral Therapy which helps with misshapen heads. I would love to answer any questions that you have. Stretching is important for torticollis, but there is probably an underlying body problem.

Dr. A. Dunn

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answers from St. Louis on

Hi B.
First of all - you should be proud that you are an over the top parent! we all should be. Second, you really might consider upper cervical chiropractic care for your little one. There is a website called that can give you a ton of information.
Basically, alot of babies end up with birth trauma at the top of the neck. Some babies end up not being able to turn their head to one side or the other - leading to breastfeeding issues.
We see alot of this in our office. You just need to find someone skilled with infants. I can help you do that if you let me know what area you are in.
Chiropractic for children is extremely gentle and easy for the baby. Most actually like it!
Send me an email if you'd like.
Dr. J.

1 mom found this helpful


answers from Joplin on

Hi B., my first child-who is now 6 was diagnosed with torticollis at 4 months. I was an over-the-top mom,too and was very scared for him. His was very, very bad. What i have realized about some dr.s is that they like to give you a worst case senario to prepare you. There are a lot of other things that you can do before surgery would be necessary. First they will send you to physical therapy. My son didn't go, because of a bad ped, until he was 9 months. basicaly the dr wrote the referal and told me to wait until pt called me. He forgot to write it in my sons chart, and never made the call to pt. the pt will give you exercises to do, and whenever your baby is up PUT HIM ON HIS TUMMY. He will get mad sometimes, but make sure his head is positioned correctly. There are a lot of other avenues to go down like botox and taping the weak side before they will ever go the helmet route. All it really did to my son was slow down his gross motor a bit. He didn't start walking until 18 months, and he was so bad that strangers used to comment about it. He would of walked sooner if he had got into pt when he was first dianosed. He still does have a bit of trouble with his fine motor skills, but I'm not sure how much of that is him wanting to go play superheros with his friends, or the torticollis. Anyway I was a first time mom with a torts baby and I know how scary it can be, but it doesn't last forever



answers from Tulsa on

Hi B. My name is H. and My son had torticollis. This is not a big deal My son also had decreased motion I took him to a specialist and he told me that almost all children have some degree of torticollis when they are born. Torticollis is the tighting in the muscles of the neck and head and after being scurnched up for nine months it is very usual. I also would not be to worried about the head do not take drastic measures like a helmet or surgery, any doctor worth a gain of salt would only use this as a LAST resort. My son also has a lop sided head and it is just how it is. Your daughters head my evan out some still. I do not know where you live but if you live in Oklahoma Let me know and I can recomend A GREAT doctor.



answers from Springfield on

Is you daughter in what they call early intervention program, I dont know much about this, but I do know both of my kids are in this program, and they are awesome. I have heard of this torticollis however and from what I have heard of it the helmet therapy is awesome and works wonders. I know a child that has went through it and now the head form is in great shape. But they went through the early intervention program to. and have therapy. Just an idea. And about your hubby telling you to relax, well sometimes that is the only way they can handle situations is to act like it is nothing to get upset up. You sound like me though and you want to know all the facts. My other suggestion is have you look on the sites for torticollis and seen what all they say about this. Well Not sure this has helped any, but hopefully it has.
Good Luck. And May God bless You and Your child.



answers from Wichita on

My daughter had torticollis and also brachycephaly (flattening of the back of her head). She's been in physical therapy to work the muscles in her neck and you can't even tell she had torticollis. She's also currently helmeted. She got her helmet in the end of November and is almost to the point of not needing to wear it anymore. We've had no problems with the pt nor helmeting and the difference in the shape of her head is astounding.



answers from Tulsa on

My son was born w/ brachecypholy (sp)-flathead in back because he was so huge for my tummy. The doc kept saying his head would round out and didn't. We insisted on the helmet (neice had one for torticollis) and it worked great. They are very low risk and the longer you wait the longer they have to wear them and the harder it is to fix their head. If you don't do it it can cause future headaches, jaw issues, vision issues, ect.

HOWEVER, it really isn't a big deal and can easily be fixed!!!! My niece had torticollis and got flat head on one side. Her forehead started protruding on one side from it. She did helmet therapy and now she looks perfect!!

Like I said earlier, it takes a while to get insurance approved (we were lucky and they covered it), have the cast made and sent off, then made and returned. It took us like 2 months. We lost time because I listened to my Ped and he had to wear it longer. Pray about it, make a decision and jump on it if you decide the helmet therapy is for you.

Totally not a big deal!!! The harshest thing was having my son casted for the helmet. They get used to it!! And will thank you for looking normal when they get big!!

-brings me to another point. My sister-in-law did not notice how bad my niece was getting because she saw her every day!! You might have a slightly distorted view from being mommy and seeing her everyday.



answers from Oklahoma City on

You want to have her checked for klippel-feil syndrome it is a fusion of the cerviel vertiebre and torticollis is a thing that many of us with kfs has there is a support group for it too. I know that it might is seem scary but it really isn't that bad and if it turns out that she dosen't have kfs that is great



answers from Kansas City on

My main advice is to make sure that they xray your child's neck before they start any stretching excersises to correct. They need to rule out any bony malformations first. My son was diagnosed with torticollis when he was 3 months and they started physical therapy right away with stretching excersises. We had his neck xrayed a month later and found it was due to spinal annomalies and stretching could only potentially do more damage. Good luck and don't be afraid of the helmet.



answers from Springfield on


My grandaughter also had torticollis. They started with some exercises and sand bag weights on her shoulders and when that didn't work, she had a helmet and phsyical therapy. She did excellent. I'm sure my daughter would be happy to talk more with you about his if you'd like.



answers from Springfield on

B.-- I feel like I could have wrote your question!! My daughter is now 2. She was about the same age as your daughter when she was diagnosed with torticollis. We noticed a decrease in range of motion, like you, and took her to be evaluated by a pediatric physical therapist. Once we got there, she evaluated her, and she said that she was mild. She gave us some sheets with exercises to do on them, (hold her on different sides of the body, on her tummy and hold interesting things to look at or noisemakers on the side that is affected so she will try to look that direction). These things will stretch her neck muscles and make them as long as they should be on both sides. That is all we had to do, and it wasn't long and I have almost forgotten that it ever happened. Like you, I was sick with worry. I still get sick with worry about things. I don't know how to make that better, but I have to say that I have felt better after reading responses on this website. Just talking to other people and letting it all out, getting the information that you need, should help. Anyway, talk to the physical therapist first-- it may not be serious, and just something you can fix at home. (We never went for therapy after the initial eval. She said to come back if it didn't fix itself with the help of the exercises we were doing, but we never had to.) I know that pediatricians can be sort of too serious sometimes, and they don't really know how to treat the torticollis; that isn't their specialty, and that is why they refer you to someone else. The physical therapist will give you a good indication of 'where to go from here'. Good luck!!! <<hugs>>



answers from Kansas City on

My oldest son had torticollis from sleeping in his bouncy seat too much (he would always turn his head to the same side). We didn't realize that his neck muscles had shortened until he was about 4 months old. An occupational therapists showed us some exercises to do with him and we did them everyday, religiously for about 3 months. Also make sure to turn her to different sides when she is sleeping, sitting in a bouncy or swing or when you are feeding her. When Evan got old enough to be spoon fed, we were told to sit on different sides for each meal, so he would have to turn his head different directions. By the time he was learning to crawl around 7 months he had fully outgrown the problem.

His head was also very flat on one side. His doctor suggested (although he didn't push too hard) that we consider a helmet. We decided against it after doing some reasearch and talking to other people. He is now almost 5 and you cannot tell at all that he ever had a flat head or problems with his neck. I think mostly his head has reshaped on its own and also with more hair it is hard to tell any difference.

Unless her head so flat that it is causing problems, I wouldn't stress too much.



answers from Kansas City on

My daughter saw a specialist at Children's Mercy for a misshapen head. They told us they are finding that the children with and the children without helmet therapy are ending up with the same shape to their head by their second birthday, that, along with positive comments from the specialist regarding the progress she was already making were enough to make us decide against the helmet. But, my daughter only had the misshapen head.

We bought the Boppy Noggin Nest to use in her swing (where she liked to nap) from I feel this item really helped. Additionally, we did not see the specialist until she was nearly 7 months. I recommend checking out the Yahoo!Groups for "disorders" such as this. They were a wealth of information for us.



answers from Seattle on

For treatment with the torticollis, you should find a massage therapist who is highly trained in Repetitive Use Injury Techniques or a clinical massage therapist. Your insurance should coverage something.

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