30 answers

My 6 Month Old Baby Has Torticollis

My daughter was diagnosed with torticollis a few months back. If nobody knows what this is, it's a condition where her neck muscles are tightened and she tils her head to one side constantlys. My question is, does anyone else have any experience with this. She is doing physical therapy for the past week. Has anyone else had this problem with there baby? I'm really concerned about it. Is there any long term effects? I have seen no improvements over the past week. Any advise would be great!

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I don't know much about it except that a friend's son had it. They did therapy and he wore a helmet for 6 months. After that, he still did therapy for 6 months but was able to take the helmet off. The helmet keeps his neck straight. I would recommend it before he develops too much.
ps/ you can google it and get tons if info....
Good luck, W. M

She may just outgrow it, if the muscles are exercised daily. Without treatment it u8sually tends to get worse, but not necessarily. As the neck muscles pull the head toward the favorite side, they tend to constrict & get shorter while the muscles on the opposite side stretch out thus gradually worsening the condition.
I would recommend follow up with a chiropractor who has advanced training with newborns.
M.

More Answers

My daughter developed torticollis as an infant from sleeping with her head to one side. I did a lot of massage (I'm a massage therapist, but you don't have to be)on her neck and shoulders to help alleviate the tightness in her neck muscles. It took some time to release (weeks, maybe a couple of months), but eventually it did and she has no problems now (she's 3). Good luck and don't worry too much, she'll be okay.

Hi A.! My sister's son had it as well, and with time, it will definitely resolve (at leat her son's did), but you have to be patient. Continue the PT sessions as well as be very diligent with the home exercise/stretching program, and you will see results. Its hard to hear them cry during the stretches, but its key to success. When she sleeps, make sure head is tilted in the corrected direction (check with PT). It can definitely be corrected with no long term effects. They told my sister that this most likely happens b/c of position/activity level in womb. Good luck!

She may just outgrow it, if the muscles are exercised daily. Without treatment it u8sually tends to get worse, but not necessarily. As the neck muscles pull the head toward the favorite side, they tend to constrict & get shorter while the muscles on the opposite side stretch out thus gradually worsening the condition.
I would recommend follow up with a chiropractor who has advanced training with newborns.
M.

My youngest (now 9) had mild torticolis as a baby. We took her to a chiropractor a couple of times and that took care of it. Ask around for a chiropractor who's good with kids.

A..

A.,
My 4 month old was diagnosed at his 2 month checkup. We have been doing PT for 2 months and I have seen a great improvement in his neck. We are now working on positioning to round out his neck and find out next week if he has to wear a helmet. If you are in the Wilmington area Renee at oleander rehab is a great PT.

my daughter was also diagnosed with this at 4 months. she is also going to physical therapy. they gave us some exercises to do at home which include literally stretching her neck in the opposite direction and also placing toys to the side she tilts to so that she will turn her head in that direction. that seems counter intuituve, but the neck muscle is both tight and twisted. you probably have noticed that when she sleeps she turns her head opposite of the neck tilt. you want to encourage her to turn it toward the neck tilt. i can share more specifics of the exercises if you like. my daughter's is not severe and is getting better over time. we also had xrays done to rule out any malformation of the spine. it was fine.

As a peds nurse, it is very normal, physical therapy is a great thing, you just have to retrain her neck. don't worry about this, have you read about it on the internet, go to www.webmd.com and type in Torticollis. Good Luck. J.

My daughter had that also but she started her therapy when she was about 8 wks old - she went from May until September - once a week. Just start doing everything the opposite way you normally would - I found that helped quite a bit. When you hold her hold her on the opposite arm etc.... Don't worry she will be fine!! You wouldn't notice too much improvement right away. Give it a little time - do the exercises at home that the instruct you to do. Feel free to ask any more questions - I'd be happy to help!!

My mother in law has this diagnosis. It took a long time to be diagnosed. She is followed by Dr. Massy (the female one) at Duke. She actually recieves botox injections in her neck, twice a year, to deaden the nerves and prevent the tilting. I did not realize this was present in children.

A. my oldest daughter had it when she was young and her head was flat in the back from not sleeping on her tummy or side. She wore a cranial helmet for about 4 month if I can remember correctly (now she's 4 1/2). But as for the exercises, keep them up, I hated doing them because mine would cry but I finally made a game of if. I'd stretch her neck to the left and when I had to hold it there I’d give her kissies on her neck. Eventually she was ok with it. But it all worked out. Stick with it. Good job.

V. (SAHM of Two)
www.ListCrafter.com/ValerieAltman

Hi A.!

For starters, if you do the exercises - it'll go away. I noticed at 1 week old my daughter was having problems with her neck. NO ONE explained to me how serious his issue could be if untreated. She faught me tooth and nail to do the exercises. I finally had to lay her down my legs and use a cell phone to draw her attention the different directions. In the meantime, she had to wear a DOC Band (through Cranial Technology) to take care of the shape of her head. Cranial Tech is in Charlotte and they do free consultations. This was an awesome group to work with and very baby friendly! She is now 2 1/2 and has a beautiful round head and no neck problems!!

Good luck to you!
P.

HI A., There are wonderful modalities to help your child. In addition to PT, MFR, there is also Cranial Sacral therapy that is very gentle, effective therapy. I hope your PT has knowledge of that also!

I am a Massaage therapist and OT Assistant.

Let us know how your baby does!!

E.

Well my name is T. I have had this condition since I was a newborn. I was in my mother's womb and layed on the right side of my neck. I was diagnosed with torticollis at birth. I have been through some surgeries too. Keep going to physical therapy because it helps some. I have had this condition for 15 years now. I have learned to deal with it. I hope I have answered your questions.

Has your child had an MRI yet? I think it is warranted to rule out more serious problems. I and my children have Chiari Malformation and there are many symptoms as a result of it. A six month old baby shouldn't have this without reason, that I know of. A neurologist would be a good start.

My daughter was also diagnosed with this after we took her for a consultation due to a very flat head at about 6 months old. We did the exercises and wore a DOC band for 3.5 months. When it first happened, I was devastated. But the whole experience was completely painless and actually very wonderful. The exercises never bothered her, she thought they were fun. The helmet completely reshaped her head. She is now getting ready to turn 3 years old and has a beautiful, round head and shows no sign of the torticollis. Good luck!

my 3 month son was just diagnosed with it as well, i found some exercises on the internet, and im going to work on it until his next doctor appt and then ask them what i shoudl do.. some days its better and some days i feel like i have made no progress it worries me soooo much!! i would say just keep doing the physical therapy..

My friend's son had this. I believe they ended up doing surgery when he was about 8 to release the shortened muscles. I remember him wearing a brace-like collar on his neck for a long time. PT helped him only slightly. However, I don't think they identified his problem until he was 2 or 3 years of age. Have you spoken with a Chiropractor for any help?

Praying your son's neck is perfectly straight soon!
D.

My youngest had torticollis too, and he did PT for several months, but it's very important that you do the daily exercises and stretches with your child as that will make the biggest difference over time. My son also had a flat spot on the left side of his head from always turning it that way when lying down, and we looked into doing a helmet to correct it, but our pediatrician, even though she was happy to give us the referral we needed if we wanted it, said that most kids' heads will fill out by the time they're two. We decided to go that route. Our son just turned two, and his head has been fine for a while now.

As for the exercises, I would slack off once I saw some improvement, but within a couple of days, my son would regress, so clearly the home exercises made a difference. I know it can be hard to be consistent with them though, so good luck! :)

Our daughter got a torticollis in her neck when they took her out during the c-section. I did not really notice it until about 2 weeks after her birth and thought it was a tumor b/c her neck had this huge hard lump in it - well it was her muscle. We massaged it gently and when she was in her bassinette I would put her mobile to the side that the torticollis was on to encourage her to look that direction. They do go away but it took a long time. In fact, her head became slightly mis-shapened due to her only being able to turn one way for such a long time and only sleeping on her back. I would not be overly concerned about it, it did not seem painful and it will go away, they just take time depending on how large they are. I can't see any long term affects and she is now 20 months old. I know it was completely gone by the time she had her 1 yr check up and possibly at her 9 month check up but can't remember. You can't even tell she ever had it. I would say the one thing you can do is to stimulate her turning her head in the direction that she is limited to help the blood work it's way out of the muscle. Hope that helps!

A very skilled pediatric chiropractor. Tracey Barnes on Cannons Lane in Louisville is amazing.
I have heard a licensed massage therapist is also great.

Hi,
I know of this condition only from this yahoo groups page:

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

I joined because my daughter had reflux-there are also many other conditions and topics they talk about. Try there and look at older posts for info and/or join and post a message. The moms in this group are great!
Good luck
S.

Hey A.. I don't think anyone here has mentioned this yet. First of all...I'm so sorry you're are having to go through this, and I sympathize with you. We too were told that our six month old had congenital torticolis. After the diagnosis, our doctor started by giving us some stretching excercises we could do at home. When those weren't working we got very frustrated. Then one day, while our son was lying on his changing table, one of his eyes was looking at me while the other looked in another direction. I told our ped. about it and he sent us to a ped. opthomalogist. We took him to see her and as soon as we walked in her door she saw his head tilted and said, "hey buddy, I know why you're here". We couldn't believe that his head tilt and his eye problem were directly related to each other.
I don't know if this would be her problem, but it's definitely worth looking into. If she does have an eye muscle problem you should be able to tell when she is lying down on her back, watching tv or while you're changing her. Look for any assymetry in her eyes. When they straighten their head the eye moves out of place, so they compensate by tilting so they can see correctly. Our son had surgery to correct his eye and now his head tilt is almost gone. It should straighten up all the way eventually.
I'm glad you're getting something done about it now, we weren't so lucky. Our son was almost a year old when his eye problem was addresed. He fell behind developmentally because he had a hard time with balance. It was much later before he could walk, run, jump, and climb...anything that required coordination. The sooner you address it, the better.
Good luck to you and you're welcome to contact me if you have any other concerns.

My son had torticollis as well. He did physical therapy for about 6 weeks as well as home exercises. It completely straightened out his neck and he has never had a problem since --he is 6 years old now! One trick that worked well was to let him watch Baby Einstein and have him sitting/propped on the baby bop pillow so his neck turned toward the TV in the direction opposite of the torticollis.

I hope this helps =)
C.

Dont give her anything with caffeine in it! Make sure she drinks plenty of water as well. She will be OK!

I don't know much about it except that a friend's son had it. They did therapy and he wore a helmet for 6 months. After that, he still did therapy for 6 months but was able to take the helmet off. The helmet keeps his neck straight. I would recommend it before he develops too much.
ps/ you can google it and get tons if info....
Good luck, W. M

My daughter also had torticolis. I know that you must be worried, but don't expect your daughter to show improvement right away. My daughter was in physical therapy for a few months before her torticolis was better. Just do any exercises at home that they show you - one of the ones I did was holding my daughter tilted to one side so she had to use her weaker muscles to hold her head up straight. It strengthened her weaker muscles in her neck and helped her to hold her head straight. I promise that it will get better - just stick with it!

A.,
I am a physical therapist in charlotte and am familiar with this condition. Typically it responds well to therapy. Who is providing therapy and what training they have is important. If you are in the charlotte area please let me know as I am training in a technique called myofascial release that many PT's are not trained it. It is very effective in treating this condition and tends to have faster results then traditional therapy. Please feel free to email me privately at ____@____.com
If you have more questions about the training the therapist that is treating your child has make sure to ask questions.
Let me know if you need anything else.
S.
PHysical therapist
Myofascial Release Specialist

My son was diagnosed with torticollis when he was 5 weeks old and we went through PT (through First Steps if you are in Kentucky). He took a while to loosen up but you have to stick with it. Just remember that anytime there is a major growth spurt, there can be flare ups. My son is now 4 years old and is starting to have some mild tilting again but you just have to start the stretches again. My therapist explained it as a problem that we could be dealing with for many years (off & on) b/c when there is a major growth spurt, the bones usually grow first and then the muscles lengthen but with torticollis the muscles cannot lengthen at the same rate so that is why the continued stretching is necessary. And if your little one turns out to be anything like my guy - people will not even notice anything out of the ordinary unless you tell them. Hang in there!

Hi A.,

My baby was diagnosed with torticollis. She also went through physical therapy. She is now a beautiful, 11 year old girl and healthy as could be. Physical therapy definitely was the key for us. Don't give up. Keep the faith.

I had not heard of this before, but I did find this website that seems to be pretty informative!
http://www.torticolliskids.org/
I hope that helps!

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