Torticollis Support

Updated on November 05, 2009
N.B. asks from Portland, OR
20 answers

I've been working on correcting my sons torticollis/plagiocephaly for the last few months and I'm finding it a lot harder to deal with than I expected. He was diagnosed at 2 months and is 6.5 months old now with some good improvements but still has a ways to go. I'm feeling a bit guilty that I havn't been doing enough to help him because he's so resistant. We've been going to PT once a month since his 2 month check up but feel like I could use some more help or encouragment. Are there any other mamas out there that are currently working with this condition that have support groups or would like to create one?

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S.P.

answers from Spokane on

My daughter was diagnosed with torticollis t 4 months, she is 22 months now and still shows symptoms from time to time. I will tell you that the PT only gets more difficult as they get older and more mobile. He will begin to resist it more. It is so hard to do when they aren't enjoying it.

I just was given the suggestion about the Chiropractor and we have had three visits and it has made an amazing difference. I was so worried that she would hate it, but the visits are super quick and easy. They don't crack their back or anything like that (that is what I feared!).

I wish someone would have told me about the chiropractic option earlier on.

Best of luck!!

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B.A.

answers from Richland on

Our son also had plagiocephaly when he was younger and we had to do some PT with him for several months to try to correct it. It was very hard at first. We had to hold him and put his head to one side for a certain amount of time and then release and do repetitions for a set amount of time. He fought us like crazy at first, but once he figured out it was part of the daily routine he calmed down and realized we weren't trying to hurt him. We would sing songs to him while we did the exercise and always tried to do it at the same time of day so he was expecting it. Consistency is such an amazing thing. If you are doing any exercises at home, try to do them at a consistent time. I hope things go well for you and that you find the help and support that you need!

B. =)

1 mom found this helpful
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L.J.

answers from Portland on

My niece had torticollis and was also diagnosed around 2-3 months. She started out going to a chiropractor and it made a HUGE difference! After a few months my sister started taking her to PT. My niece is going to be 4 this summer and you never would have known she had torticollis. I know it was hard for my sister to make it to so many appointments and it killed her to hear her daughter crying during some of the treatment and it took a lot of exercise at home but she said it was SO worth it. Keep going to the PT and consider visiting a chiropractor as well. The younger you work through this with your son the better. Hang in there!

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M.J.

answers from Spokane on

I am not a parent of a child with torticollis but I can not encourage you enough to stick with it. I am 36 years old and was born with torticollis. They were not as knowledgeable about the condition back then. I did have surgery and limited therapy but they waited until I was 3 to outgrow it. But the damage was already done. As a result, my face is "crooked". Everything on one side of my face is smaller and lower. My ear and nose canals are even smaller on the relaxed side. I can't even turn my head all the way on one side. I was made fun of my whole life. I don't allow pictures of myself because it shows up so much more. I can't get a decent hair cut because I hold my head to the side so it's crooked no matter what.

So while I can't offer support or encouragement, please think of me when the going gets tough and stick with it. You have the benefit of knowing what is wrong with your son and physical therapy will do wonders! You can do this!

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M.L.

answers from Seattle on

Hi N.,
My daughter didn't have torticollis (so can't help there), but did have severe plagiocephaly (albeit not that severe they had to helmet her). She was also VERY resistant to tummy time, etc. Inevitably, I just ended up wearing her as much as possible because bouncy chairs, swings, etc., just contribute to the problem. She also probably ended up sitting up at an earlier age, as we worked on this quite a bit (just stacked 2 boppy pillows and gave her some toys). She definitely preffered sitting over being on her stomach. Once they can sit up fairly well, you can put them in an exersaucer. Also, extended periods in the car seat aren't great for flat heads, so when we were riding in the car, one of us would sit in the back with her, on the opposite side and keep her entertained so she was always looking in our direction. Lastly, we also changed directions in the crib and even the changing table. Hope that helps. Good Luck!

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A.T.

answers from Portland on

so sorry your little one has this problem. Please go see Dr. Kate Wiggin, she's amazing and helped my little one with many problems. She also specializes in physical medicine & I'm sure she can help him... Torticolis can be resolved. her number is: ###-###-#### Hope this helps. A great chiropractor that works primarily with babies is Dr. Judith Bagby. If you wnat her contact info, let me know. good luck.

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N.I.

answers from Portland on

Hi N.,

I don't know anything about Torticollis, however, I did go on the website to look and I don't know if this will help but it did EXTREMELY well for me - better than anything else I have tried - and believe me I tried them ALL as I had neck problems and an extremely bad case.

I do not know where you are writing from but there is an exceptional cranial sacral massage therapist who is also a physical therapist who also has a special license to do cranial sacral massage on children. You absolutely need someone who does cranial sacral massage on children - it is a special license. Anyway, go to http://massagetherapists.healthprofs.com/cam/prof_search.php and search for them.

Chiropactic may help also, but I have found that the neck/head massage worked better than the chiropactic.

If you are in the Portland OR area I could give you this massage persons name.

By the way, our names are very similar. Mine is french derivative but I am not french.

N.
wife, mom, grandma, wellness coach

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D.F.

answers from Medford on

I everyone - I just found this group, and am pretty excited! I am 30 and HAVE unresolved Torticollis. Had surgery at 13 years, and still have several complications and questions I can't seem to find answers to... So much so that I have been working on a website called www.mytortsupport.com I'd love the groups input on adding more content, participating in the discussion groups, and any comments or suggestions you have -- thanks, and you need to know that the work you are doing to resolve your babies, is THE most important thing you can do...to help them grow up "normal" - D.

My Tort Support
Source: www.mytortsupport.com
My Tort Support is a resource and support network for parents and caregivers of infants and children with congenital muscular torticollis, ocular tort, and other forms of torticollis, CMT

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A.V.

answers from Seattle on

I highly recommend chiropractic adjustments. Both my sons have been adjusted since they were just days old. My second son was born with what could have been what you are describing (just never diagnosed by his Ped), his head was mishapen due to the way he was positioned in utero. And he could not turn his head to one side. I started getting him adjusted right away, and my Chiro showed me massage techniques to relax his neck mucles and tendons. He's 11 months and his head is almost totally round now, and has full range of motion in his neck. I can't stress enough that the earlier you get them adjusted, the better and sooner you will see results. I know people are scared of having small children adjusted, but it is totally safe. My boys love seeing their Dr. "Pop-Pop". Just find a chiro that works with kids, and if youa r still scared of manual manipulation, then find a Dr willing to use a hand-held device for adjusting, called an Activator.
Pt is great, but once a month will not get you the results you want fast enough to prevent permanaent damage. Used in addition to Chiro, I think you and your son will be feeling better MUCH sooner. Best wishes....

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J.N.

answers from Seattle on

My son has a mild case of tortecollis. We have been going to PT for 4-5 months now. We started out going once a week for the first 6 weeks (I think) and then every two weeks for 2 months and are now on a once a month schedule. When you only go once a month, I think it is harder to be consistent with the excersises. You can't even tell that he tilts now and the flat spot isn't noticable to anyone but us, but he is having some lasting gross motor delays as a direct result of this that he still needs PT for.
Our PT is awesome! She gives us a lot of excersises that are play based or have to do with how we carry him or pick him up (things we are going to do anyway). IE instead of carrying him upright, we carry him to the side, facing out so that one of my arms is under him armpit and then across his body and between his legs (sorry it's hard to discribe). Because everyone's head naturally wants to right it's self, he holds his head upright, forcing his weaker muscles in the neck and the obliques to work.
As he got older he was becoming weaker on the entire left side of his body, so he had a hard time sitting because he would lean to one side, he would be in his jumper and only jump on the strong leg while leaning, he would try and turn his entire head around to see something, instead of turning and having to use the weak muscles.
I would ask your PT for some ideas (like the holding) that you can just do as part of your routine and aren't painful for your son. I would also ask to go more frequently. Others have mentioned the ball and we have found that to be really helpful. He really likes it. We have slso found that therapy goes better with my husband tha with me. He clings to me and cries and with my husband he gets rowdy and it's a game. (Not the stretching of course, but the other therapies). I have been sending my husband to PT when he is available, because it is more effective and he does a session with our son most evenings. Our PT writes notes and takes pictures if the excersises so I know what to do at home.
Are you going somewhere that specializes in children? I know that there are always supposrt groups for various things on the board at Children's Therapy of Woodinville (where we go). Or do you have a place that does therapy for the birth to 3 program in your area? They may even have support groups. In my area, it is The Little Red Schoolhouse. They might be able to help you. Good luck! it can be difficult. I had never even heard of it until this year, but apparantly it is pretty common. Who knew?

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K.B.

answers from Anchorage on

Out of 5 kids, only my oldest twin (8 months old now) has torticollis! She was also diagnosed around 2 months, with me pushing why her head was flat. Something had even been mentioned in the NICU days after she was born but no PT was started then. But anyways...

She has been going to PT 3 times a week, 2 times a week, and are now down to once a week. Trust me, this is tough having 4 other children, (2 older in school, another twin and a 4 year old to tote to PT so often), BUT she is improving SO much! We're starting to see her head round out and her turn her head to the right and use her right hand and actually spend some tummy time and scooting backward, spinning in one direction, she is also sitting up like a champ, bending over picking stuff up and sitting back up and sitting with her back straight. It's only 5-10 minutes before she gets frustrated with tummy time, but it's 5-10 minutes! The Physical Therapist had her in a collar for awhile, but she had a month of severe asthma and she didn't feel safe having her in the collar, so we no longer use it. Can I push how much he needs to be going to PT at least TWICE a WEEK!

I think I'm a bit luckier having twins because she pushes to catch up with her baby sister who is already crawling and pulling herself up on everything! I know she gets frustrated watching and not being able to get into things like "sisser" does. We used to put Nylie on the left and Grace on the right so no one would mix them up or give the wrong baby the wrong meds (Nylie has SVT and acid reflux and Grace doesn't), but we were told to switch them so Nylie had no choice but to turn her head the other way to see Grace. So if he has a favorite toy or something, only put it on that side.

ALSO! We took her to a pediatric ophthalmologist and she was diagnosed with nearsightedness and an astigmatism on her right eye and a lazy muscle in that eye, which we are watching until she's 1 and the doctor makes a decision what to do with that muscle (i.e. surgery). She's got cute little baby glasses! LOL ... I am also thinking about taking her to a chiropractor. I've been going for 8 years for a back injury (kept me from having surgery) to see if she was misaligned because of the emergency c-section. She's as stiff as a board, but Grace is like a slinky on crack! LOL ... She HATES being tossed up, where her sister could do it all day.

I don't know if anything has been said about his head size! Nylie is being watched for rapid growth of her head, and the fact it's so big (97th percentile). It's leveled out, but still being watched. It could be fluid on the brain, which would require a shunt being put in to relieve the pressure. I DON'T WANT TO SCARE YOU!!! That is not my intent, just wanted to list everything that one thing has lead to another with my little Ny-ny. Five children and she's the only one that has had any problems like this! And the fact that she's a twin lets me know it's a fluke, not anything I did during my pregnancy (besides eat too many double stuffed oreos! LOL)

I can go on and on, but I'll spare you and finish up! I'm a stay at home mom and Army wife with a back to back deployed husband (joke is he was home long enough to knock me up really good this time and leave me again!), and we're stationed in Anchorage, Alaska. If you want to contact me so you can talk with me about what we're going through with the torticollis or anything else the doctors have found issues with, FEEL FREE! I know I was scared at first, but now our goal is to get her caught up with her twin sister! I read what Melanie (my 2nd daughter's name too!)had to say about living with it uncorrected, and if there's something I can do for my child to spare her from that, I'm first in line! I want her to have the best life possible!

Sorry about the rambling, I really am bad about that! Reply to me if you would like, and we will chat!

Best wishes from a mother right there with you...

K.

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R.S.

answers from Seattle on

Hi N.:

My son was diagnosed with torticollis at 2 months of age as well. He is 4 now and is perfectly fine. It's so very important that you are persistent, even if he cries or whines when you try to do the therapy. Just a couple of minutes a day is better than nothing. I suggest a few things: lots of tummy time, gentle stretching exercises and buy a large excercise ball and roll him on his tummy on that. It's more fun for him because he's off the ground and doesn't have to "push up" like normal tummy time. You tilt him to the side to get him to use his weaker muscle. You can also hold him at his hips, facing you, and tilt him that way too.

I'm not sure where you are living or where you're getting PT, but we went to Seattle Children's for my son's PT and they were wonderful. He had treatment for about a year before we were released.

Good luck - and remember you're doing the best you can.

I know there's a lot out there on the internet that can scare you, so be sure to follow your doctor's orders. I know there's info on the web about chiropractic, but remember that any sort of adjustments to the neck are dangerous. My neurologist told me this when I explored chiropractic care for my headaches. Along the back is fine, but not the neck.

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C.W.

answers from Seattle on

Hi, N.. My son also has torticollis (a very mild case). He would scream at tummy time and never wanted to be on his tummy. Our pediatrician referred us to a children's chiropractor for him. All it took was the first adjustment (very safe and not at all scary like some have claimed), and he became like a whole new baby! He was happier, more active, and started loving his tummy time. He was being adjusted once a month for a while but now it has gradually decreased to once every 2 months. I cannot tell you what a difference it made. My son loves his chiro visits.
Not sure where you live but we see Dr. Cortney George at Mother's Natural Child and Medicine Clinic in Woodinville, WA. She is great! And she specializes in torticollis. Plus, most insurances cover chiropractic because they are recognized to be very helpful and legitimately cure their patients. This was actually proven in court when the AMA took chiros to court over their claims that they could cure their patients. The AMA was outraged at this claim because of course, only doctors and drugs can cure, right? Wrong! ;) The chiros successfully proved they were curing their patients and won in court! That's why insurances now cover chiropractic care.
I really think your son would greatly benefit from chiropractic care. You might even just do a meet and greet to get a feel and ask some questions. Hope this helps and hang in there! My son is crawling and on his way to walking now and has perfect symmetry in his face. Chiros rock!

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A.H.

answers from Seattle on

Hi N.. I have never been through what you are going through, so when I came across your posting, I needed to find out what this condition was, because I had never heard of it.
Well upon some research, I found a page of a Mother with two children who had plagiocephaly. Im not sure if it is the same thing you are going through or if it is more the Torticollis that you are dealing with. But she has a web page that also mentions a yahoo support group for this. I wish you the best of luck.
http://www.thefilyaws.com/plagio/plagio.html

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D.M.

answers from Portland on

we've been taking our daughter who is now 19 months old to craniosacral therapy since she was 2.5 months old for her torticollis. she started out going twice a week, then down to once a week, then once a month, now every two months.
she gets a chiropractic adjustment along with her neck therapy and she's shown a huge improvement.
her dr. is amy watson, check out wholemamawholechild.com and good luck!
email me if you want to talk about it further.

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J.D.

answers from Seattle on

Hi,

I went through this with my daughter, she was diagnosed at 3 months and is perfectly fine now. It is hard but just stick with the exercises my husband had to do it every night to her favorite music dvd and it worked really well. She went to PT 2 times a week and then went down to one and eventually we just did exercises at home until she was fine and if we saw a relapse we did the exercises at home again. I know it is hard but you will get through it.

J.

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T.R.

answers from Portland on

Hi N.,

I was about to head to bed, but had to reply quickly to you. My son was diagnosed about the same age as yours. We did a whole lot of physical therapy, took a break after he walked a while and now we're going again, back to work on a few things. I'm surprised that you are only going to PT once a month. We went every week for many months. I would be glad to talk with you and support you. It is hard to go through, especially since it's hard work for the kids and they don't like it.

I'll share what my therapist told me early on. It's our kids jobs to let us know when they are uncomfortable. We are making them uncomfortable by making them work hard and stretch and strengthen an area that is hurt and tight. Of course it's not fun! She called it a noisy therapy. Doesn't make it easy - but it helped me to hear it put this way. It makes sense.

My son is doing really well and the home exercises we did made a huge difference. Keep it up. Your son will thank you later!!

You can email me at [email protected]____.com and I'll send you my phone # that way if you'd like!

Take care,
T.

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M.K.

answers from Seattle on

NW Center is part of the WA state early prevention program- they do PT, etc. but they also offer classes and support programs for different things. i had a few sessions of PT w/ my son who was doing this funny head/neck thing at around 6 mos. It turned out not to be torticollis but they asked about that when they did the evaluation. They have support groups and parenting classes for various things,some of it is special needs based but a lot of it is for all parents. Much of the stuff is free or can be subsidized if cost is an issue.
http://nwcenter.org/CS-ChildEarly.asp

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T.R.

answers from Bellingham on

My daughter had that also due to my lying on the same side of the bed (we co slept) and she was always turning her head the same way to look at me. So I just switched sides of the beds until her head was able to turn all the way back the other direction again because she would always turn her head to look at me. I don't know how advanced your son's is, or if something that simple would help, but it couldn't hurt either. I noticed it pretty quickly in my daughter, so it didn't get a chance to progress very far, I just started noticing that her head kind of slumped one way all the time and her body curved that way also. Good luck.

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