Torticollis Support

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

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.

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.

There is a Yahoo! support group for parents of children with Plagiocephaly...

http://health.groups.yahoo.com/group/Plagiocephaly/

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

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

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....

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!

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!!

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.

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.