Anyone Have Children with Torticollis?

Updated on September 27, 2006
J.S. asks from Clifton, NJ
9 answers

Please help with any info and positive stories!!!! my daughter was diagnosed with this 2 weeks ago and we are doing home exercises with her 5 yimes a day and tummy time whenever we can and she was evaluated by a PT who said she is very mild. however, her head as a result is slightly assymetrical as are her ears and i am worried she will need a helmet! i have heard mixed things from different therapists/dr.'s about whether or not catching it early (shes 2 mos. old)and it being mild and being diligent about exercises and PT will make the head go back/round out???? will her ears???? just wanted to see if any similar stories out there since i am a nervous wreck!!!! thanks!

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K.H.

answers from New York on

My Daughter was diagnostic with a stroke when she was three days old. All of everyone’s prays were answered and she is healthy, ok except for that small part of her brain that is dead. On of the things we needed to look is/was paralyses, and when she was 5 months old we noticed that her head tilted to one side. My parents go to a chiropractor regularly, and took her with then. She worked on her once a week for a couple months and it went away. You may also want to try to see/record how your child is sleeping which side. This includes your car seat. Also how much tummy time does she get, will put up with. Mine didn’t like tummy time!!!!

Good luck, if you need to talk just email me.

Karen

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D.G.

answers from Buffalo on

Hello J.. I have five children but none of them had Torticollis. I run an office for three Chiropractors and three massage therapists. I spoke with one of the doctors here and this is definitely something that can be helped using varios methods. Check with your doctor and if you want your baby to be checked out by a chiropractor make sure you choose a doc who will work in conjunction with your other docs. The docs I work for are very medically based and keep the patient's primary doctor abreast of the treatments. All of my children have been adjusted by the doctors in my office for various reasons: sports injuries, headaches and colic. If you need any information just contact me and I could try to help you find a doc in your area.

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J.C.

answers from Albany on

J.,

My first, Josie, had torticollis due to her position in the womb. Apparently, she favored keeping her head to one side in utero, and, as a result, her neck muscles were not evenly developed on both sides. We didn't find out about this unti 4 months of age when a developmental pediatrician pointed it out. We went to physical therapy twice a week for 2 months, then once a week for 2 more months, all the while doing home exercises daily. By the time Josie was at her 9 month check up, we were "cured." She never crawled, though, and we attribute some of that to the fact that she couldn't turn her head easily, so she preferred to be upright (scooted around on her bottom a lot, and walked early). She's now 21 months old and perfect... a long, skinny neck with a perfectly rounded head. Physical therapy is expensive, tiring and sometimes a battle, but it really did save the day for us. Good luck with it, hang in there, and let us know how she develops!

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M.S.

answers from Springfield on

Hi... I'm not sure what torticollis is, but my daughter has plagiocephaly;she had a helmet for about 3-4 months and her head is not completely rounded out in the back, but you can't tell..(i know because i know her history). her ears were uneven and the helmet helped with that.. I mean the shape of the head is more symetrical so things are more even all around. I hope this makes sense and helps you a little. I was really very hesitant in the begining with the whole helmet thing. I didn't want her to wear it and I was embarrassed to take her into public, but you would not believe the amount of kids you notice wearing helmets when yours has one!! and so many mothers will tell you, "My son (or daughter) wore a helmet. It is not as uncommon as you may think! :) Good Luck

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K.S.

answers from Providence on

My son is 3 1/2 now and he had plagiocephaly which is the flattening of the head associated with Torticollis, although the doctor did not officially diagnose him with torticollis. He is a twin and it's common with twins that baby A will get "flat head." He was diagnosed at 2 months (at my request, my pediatrician wanted to wait a little while) and got his helmet at 3 months. He had to wear the helmet for 23 hours each day, that other hour is for washing it and letting it air dry cuz boy does it get sweaty in there! Honestly, he did not mind wearing it one little bit! The couple times we mistakenly put it on his twin, he didnt mind either! haha! We decorated it like a Patriots helmet with stickers and put our last name on the back of the helmet like he was a football player. He only wore it for 3 months and it made a world of difference! Don't hesitate to use the helmet asap if the dr recommends it. The earlier you start the faster her head will be corrected. Good Luck!

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M.C.

answers from Boston on

hi J.,

My son also had this-right side torticollis and mild flattening. we didnt notice it until he was 3 mos and our pediatrician said dont worry about it. Oh, if I had only know what I do now. I am SO happy that youre being so proactive about it now. Good for you. You dont want to go the helmet route if you dont have to. We let it go a few months, hoping it would just work itself out, until my son was 6 months old, on the advice of his pediatrician, It wasnt until then did we discover the torticollis and by then, the flattening was more pronounced and we had to get him a helmet. He was in the helmet from 8 mos to 13 mos and his head is perfect now. I am so grateful for that helmet for what it did for my son, but I'd never want to go through that again

BUT, I think you are in great shape and since youre on the ball so early, as long as you are 110% aware of that little head at all times, (this will be exhausting for you, but worth it in the end) your daughter will be fine. Those neck excursuses are *key* because that is the only think that will resolve the torticollis, which is what is causing the plagiocephaly (flat head).

Did the Dr give you a number to the severity of the head flattening? usually it is on a scale of 0-3 (normal) 4-12 (mild) 13-25 (severe) My son was an 9, which is mild.

My husband and I were recently on Channel 5 with Susan Wornick, along with another couple with a child in a helmet, trying to get the media to warn parents about this condition, whih is called plagiocephaly. I cant tell you how happy it makes me that parents are more aware these days of it, and that they need to be aware of head flattening with their baby, and what severe cases can cause in babies. In your case J., youre catching it early, so your daughter will be OK. Just continue to be proactive. Just continue to do tummy time, switch your daughters position in her crib, do exercises, and try to avoid the use of bouncy seats, swings and long car trips as much as possible (I know, almost impossible!)

One thing I wish I knew about was a little chair for infants called the Bumboo chair-it also helps with their posture and back strength while keeping babies off their heads.

Please feel free to contact me personally if you have any more questions or just need to talk. I have been living with plagiocephaly 24/7 for a year now, and have become an advocate for awareness, so I can help you out if you need it. Good luck!!-M.

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S.I.

answers from Rochester on

I have 3 kids and two had this happen.It's not as bad as it sounds.Just make sure to rotate what sides she is laying on and it should fix itself.
-Shanie

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D.F.

answers from Rochester on

J.,
If you would like help with Torticollis I would be more than happy to give you excercises to do at home. We can also teach you at home baby massage. These two things will allow proper development of the muscles. It will be fine you are an attentive mother who is working to find the best solutions. Just please make sure that you get advise from a professional.

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D.

answers from New London on

my son had it. he was born with it (his head was flat from inutero positioning)and was officially diagnosed at about 3 months. we did the exercises and they worked but he needed a helmet at 4 months. it worked out fine and he developed beautifully. he needed a second helmet because he grew so fast. total time was about 5 months and he has a round head with just a touch of "head slanting" - ears that don't align perfectly. no one can tell except for his doctor and me and his dad - we are just used it and look harder than most.
don;t be nervous - it is quite common especially since babies sleep on their backs now. it is a painless process and they won't remember it.

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