Looking for Advice on Torticollis and Plagiocephaly

Updated on February 04, 2010
A.M. asks from Farmington, MI
15 answers

Has anyone had experiences with torticollis and plagiocephaly? My 4 month old has both...because of the torticollis he always sleeps with his head to one side, which is causing a flat spot and misshaping of his head. I have been doing stretches and lots of tummy time at home since the doctor recognized it at 2 months. His neck is improved-much stronger, and his neck is pretty straight, but I don't see the head shape improving. I'm having a heck of a time getting him to sleep on the opposite side, although I can get him to do it somewhat now. He' s very persistant and strong and very good at wiggling himself around until he can turn his head the way he wants it. We are also going to be going to a physical therapist but have not gone yet.
So, my main questions are:
Does anyone have any advice on sleep positioning?
Has anyone gone through physical therapy for this and how much did it help?
Can the head shape be corrected without a helmet or band?
Any experience and/or advice any of you have would be greatly appreciated!
Thank you!!
A.

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L.D.

answers from Detroit on

My daughter had both as welll. But it was due to the positioning in the womb - she's a twin and her head was wedged in my pelvis.

We did PT - which she HATED! and the helmet. The helmet never bothered her and she wore it about 7 months (I would decorate it up and she looked adorable!!)

Unfortunately, we never had any luck with sleep positioning - but the therapy helped loosen her neck muscles and she has full range of motion.

Good luck!

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A.U.

answers from Detroit on

My 5 1/2 yr old daughter had that. It totally freaked me out. We did notice it very very early which helped a lot. I think she was less than a month old. The Doctor kept saying that it would get better on its own just to reposition her, but that wasn't good enough for me. Especially since at around 3 months her face literally looked different on each side, one side was thinner and her eye even looked different! I took her to a Chriopractor, they just confirmed the tight muscles on the one side and use some tool that made a loud click... I don't really know if that helped.. Then we took her to a Pediatric Orthopedic Surgeon in Royal oak, sorry can't remember his name, and he said that it wasn't bad enough to need any kind of surgery and just told me how to hold her . Both my pediatrician and him showed me to hold her sorta like a football around the house as often as possible. They had me hold her with the side of her neck that was tight down and let natural gravity sorta gently take it down....and if necessary push....very very gently down that direction... Also when sleeping let him fall asleep while your holding him once a day or so and let the neck lean the direction that needs help. We would also sleep her completely with a sleep positioner every night, that must have helped!
I'm happy to say that my daughter's head is 100% perfect now with no help from a helmet or anything else. Once you get the neck muscles loosened up on that side as his head grows more it will push out/fill in the areas that need it. Back when it was happened to me I wouldn't have believed it. If you want I'll send you a picture of her at around 3 months so you can see how bad she held her head went to one side. I know sometimes it helps to see other kids that had/have it. I'd say somewhere around 6 or 7 months you could tell a huge improvement with doing the exercises everyday and sleeping her on her side. Good Luck, he'll be ok :)

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D.H.

answers from Detroit on

My 6 year old had this as a baby and his head is shaped fine now. My sister is a physical therapist, so she noticed it early and we went to see one of her co-workers who specializes in peds. She taught us the exercises, and we did have him sleep on his side (switching sides every time he slept) with a receiving blanket rolled up tightly behind his back to help keep him positioned that way. He was in a co-sleeper next to our bed so we felt more comfortable being able to monitor him this way. I do remember that it took a LONG time for me to see a difference in his head shape, even after his strength improved - I think I still noticed it slightly until he was about a year old. But now it's not noticeable at all. The pediatric physical therapist we used was Marie (I can't remember her last name, but she's the only Marie there) at the outpatient PT clinic at Beaumont Hospital in Royal Oak.

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B.W.

answers from Minneapolis on

My oldest had torticollis and plagiocephaly. We did recognize it about 2mos old, and started physical therapy right away, including moving his head. We ended up with a co sleeper by our bed so we could position him easier in the middle of the night. We kept moving his head side to side, alternating nights, and we also positioned him on his side when we first started, one the side that was not flat of course.

It worked. We never did go to a band as our pediatrician felt that was very overzealous. His head is great now at 7.5.

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W.M.

answers from Detroit on

My son had the same issues, right around the same age as your son. We started physical therapy right away and got him a helmet when he was about 5 months. We also tried some rolled towels on the affected side when he slept in the swing or bouncy seat to prevent his head from turning that direction (when we were around to watch, not at night). We also changed his position on the changing table and the placement of his crib aquarium so that he would have to turn his head the "good" way when looking at us/the crib aquarium. During tummy time, we put interesting toys on the unfavored side of his head so that he would make more of an effort to turn that way to look at them. I think doing all of these things, as well as the PT, helped with the torticollis.

We debated for a while about getting the helmet. We had heard that his head shape might correct itself without a helmet, but we were worried that it wouldn't, and then it would be too late (correcting the plagiocephaly via helmet does not work after a year of age). We also worried that the helmet would really bother him and somehow affect his development. But after weighing both choices, we decided to go ahead and get it. He wore it for about 3 months (some kids wear it for longer), and it didn't bother him at all. His head still has a bit of a flat spot but it is MUCH improved. We have no way of knowing if the flatness would have corrected itself without the helmet - maybe it would have. But what if it'd gotten worse? There were just too many unknowns, so getting the helmet made us feel a little more in control, and we were happy with our decision. I think you will get a lot of differing opinions about this - we got some very skeptical remarks when we decided to get the helmet - so you should, ultimately, do what you and your doctor think is best.

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J.K.

answers from Detroit on

As your other posts mentioned, Dr Rozelle is the one to see - her nbr is ###-###-####. You need to take care of this now though - we adopted our son at 8 months and by the time we tried to look into fixing it, we were past the window of opportunity to fix it (4 months to 10 months). Do not delay - ask your pediatrician to help you get an apptmt if she is months out on apptmts...Plus some insurance cos will only cover the helmet and such based on the child's age...

Good luck!

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E.F.

answers from Detroit on

My son had torticollis, and we went to Plymouth Physical Therapists on Lilley. They were incredible! I only had to go short term as they gave me the exercises to do with him at home each day. I am sure they will also have sleep suggestions for you. It is so difficult to break them from a comfort habit. Good luck!

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L.N.

answers from New York on

the head shape may not correct by itself. my daughter had torticollis, we did the neck exercises at home and with a therapist ( a few times a week), at 3 months of age she was fitted with a headband, which she wore for about 5 months (the headband helps if it is done early, after 12 months of age it does not help). at first insurance didn't cover but we asked for a insurance/case manager, which then approved the headband for our daughter. before being fitted for headband you could see her face getting misaligned (eyes, mouth, nose, and ears). did not look right, the headband corrected the problem. pm me if you have any questions

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K.S.

answers from Minneapolis on

My girlfriends daughter had Torticollis and her daughter wore a helmet for about a year. It did help the reshaping of her head and it didn't bother her. She was a little younger that you child when she started wearing the helmet and didn't have trouble getting used to it.

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H.S.

answers from Detroit on

Hi A.:
Although my son does not have Torticollis he has slight Plagiocephaly he was checked for both when he developed a flat spot on his head from sleeping on his back. We tried sleep positioners and did a lot of tummy time but he still developed the flat spot. We did not have to go through physical therapy but we did end up with a helmet. I would highly recommend the helmet and I would recommend starting it now. My son was 6 months old when his flat spot became noticable and by the time we got the appt and got fitted for the helmet he was over 7 months old. The sooner your son starts wearing the helmet the sooner he can get out of it. We have noticed a big difference since Carter started wearing the helmet and I am glad we made the decision to get one. It does not bother him at all!! It also does not bother him while sleeping. Most babies take to it just fine. Carter is 11 months old now and since wearing the helmet his head has had 1/8" growth in Novemeber and again in January. His head is really starting to round out. Our pediatrician referred us to Children's Hospital (Dr. Rozelle) I have friends that have gone through U of M hospital as well. I hope that helped! Good luck to you and your son!

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A.D.

answers from Minneapolis on

My first had this, and we did PT with her to loosen up neck muscles. I think it helped a lot. My 3rd has it now too (he is 3 months old). We are working with PT again with him. They say that you should be more aggressive with boys because it can be more noticable as they will have less hair than girls. We are having him sleep on his side during day (when I can see him). But on back at night b/c it is safer.

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N.O.

answers from Detroit on

We had the same experience with my son 2 years ago. Doc monitored the torticollis starting at 2 months. Went to the physical therapists after the 3 or 4 month checkup once a week for 6 weeks. The therapy helped alot to improve my sons neck strength and accept tummy time more willingly (they show you much better techniques to play with your child so they enjoy it more). The head shape improved the most once he was able to start holding his head up and sitting in the bumbo chair. No helmet needed. We now have a 3 month old little girl that has some of the same tendancies though not as severe.... we are trying to avoid the physical therapy just by improving the neck strength with tummy time.

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A.D.

answers from Detroit on

my son didn't have torticollis, but he was diagnosed with plagiocephaly. we opted to go with the helmet and we couldn't be happier! (we figured that as a boy he may want to have his hair cut really short) he never had a problem with it and actually looked so cute in it, we even had him dress up as a football player for halloween (so many great comments!) if anything, he never fusses when he has to wear his winter hat or hoodie... =)
but we went to childrens hospital to see Dr. Rozzelle and she was great to work with.

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K.B.

answers from Detroit on

3 of my four children have had torticollis. As for sleeping the only thing I found to sort of help was lying the baby so they had to turn to their less dominant side to see you and/or any crib toys. Physical therapy will for sure help with both the movement and consquently the flat spot. I did not use a helmet for any of my children and their heads regained there shape in time. The best advice I can give is to stay consistent with the stretching exercises and to begin PT as soon as possible as they can give you numerous stretching ideas that you regular physician may not. My children were in PT until they were about a year old. Good Luck!

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J.C.

answers from Fort Wayne on

My son had torticollis also. I opted out of using the helmet or band. I was told to give it time to correct itself. The thing is, you're talking about a head here, under hair. If it's extremely misshapen, then I could see maybe looking into alternatives, but if it's something that you think if corrected a little bit would be hidden by hair, then why bother with it? My son's head shape got better, but it took some time. Now, with the physical therapy...great job getting him into it. It really helped my son a lot. You just have to make sure to keep it up at home. As far as how he lays down, I used to go in when my son was asleep and sometimes prop him onto one side with a pillow, but really I didn't worry about it too much. As long as his neck muscles were getting fixed, I didn't worry too much about the head shape.

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