Congenital Torticollis

My infant son had that too. We went to physical therapy until he was about 9-10 months old. We only went like once a month and he did great with it. For us it wasn't a huge problem, we didn't catch it as early as you did, he was closer to 9 weeks and had some issues with his head shape as a result. But... with physical therapy we were able to correct all that without having to do one of those baby helmets. So I would say, don't sweat it. Try your best to do what the therapist says, and it will work out. And honestly, I don't think my son really even needed physical therapy for that long, but we all learned from it and the insurance paid so we kept going.

Hi C.,

You are very observant to have had this diagnosed so quickly. And you're smart to get your son into physical therapy quickly. This is going to be a long response, so I hope you don't mind, but here's what we went through and what I learned from dealing with my son's torticollis...

My son was diagnosed with torticollis at around 3 months of age. We started physical therapy right away, went weekly, and when he was around 5 months old, we added in visits to the chiropractor. The first visit to the chiro seemed to backfire, but subsequent visits really helped. The chiropractor's daughter also had torticollis, so she is very understanding of the frustrating nature of torticollis. By this I mean that my son would seem to be doing great, holding his neck straight and then he'd suddenly have a severe downturn and look kinked again for a week or more. As my pt and chiro told me, torticollis is a roller coaster, and as moms, we just have to keep doing our exercises and be patient. We have to learn to roll with it.

We continued pt until my son was about a year old, went for an additional check up once he learned to walk, which was when our pt said he was looking good enough to not have to continue treatments. My son is now 17 months, and occasionally he still gets tilted (like after a cold or teething), but for the most part, he holds his head straight. People who are around him a lot notice when he gets tilted again, but most people don't even see it. We still see the chiro every six weeks, and she helps remind me to keep up with the stretching, continue making exercises like a game (important once they're in their independent phase), etc. So the good news is that torticollis is very treatable, and with the physical therapy and chiro adjustments (if you choose to do chiro), kids with torticollis seem to "grow" out of it for the most part.

My son also was diagnosed with acid reflux at one month old. We put him on zantac and after a few months, his symptoms seemed to disapate. We also slept him on a wedge, which helped too. There is a condition called sandifer's syndrome in which kids with gerd show symptoms of torticollis, but upon treating the gerd, the torticollis also goes away. While I believe my son truly has torticollis (based on his movements in utero, difficult birth, chiropractor's observations, etc), we did see a strong connection between treating his acid reflux and his neck. At one point, we tried to take him off the zantac, and his neck completely reverted to it's "kinked" state. When we put him back on the zantac, his neck straightened. So I called his pediatrician and upped his zantac dose, at which point his neck straightend even more. You might look into acid reflux as a cause for your son's torticollis if you suspect anything with gerd...

Here's a bit what I learned, or wish I'd done differently: I wish I'd worked at the pt exercises harder when my son was an infant and more malleable. From reading the other responses, it seems that some infants don't mind the stretches as much, and there are varying degrees of tightness in the neck. Hopefully your son is more easy going than mine and has a relatively mild form! My little guy hated having his neck touched and was collicky on top of it, and sometimes it was hard for me to be really consistent with his stretches since he'd just scream. I didn't want to force him to stretch at that point because it seemed he'd tighten up his neck more when he got upset. From my point of view now, it seems like when he was little, I should have tried more variations of the stretches--using the boppy, carrying him like a football, working on getting my husband to make him look left if I was holding him upright, using the Bumbo once he could sit up to get him to look left, etc. My advice now is to try not to get too discouraged and use all the resources you've got to keep him looking the direction you want him to look.

I think my biggest breakthrough came at about 6 months when I learned that he loved watching Baby Einstein movies, and I'd let him watch them while holding him so that he had to look to the left to see the screen. This worked really well for us, since he was happy and I could stretch his neck without him minding much. Also, our chiro said that Baby Einstein was the only way her daughter would put up with tummy time for her torticollis treatments. So, even though I'm a big advocate of limiting screen time, I have to say that Baby Einstein really helped straighten my son's neck! :) I still use screen time now when my son has a tilted week--I just stick him in his high chair, turn it so that he has to look left, and put on Baby Signing or Elmo. He loves to watch them, and willingly looks left to see the TV. He's active enough now that I can't hold him and stretch him while we watch together.

We tried infant massage when my son was 10 months, and it completely backfired. I'm not sure why, but I imagine it was like when I've had a massage that's too deep and I get sore--at least that's what I imagine. My son had had a good two weeks, and the morning after we visited the infant massage, his neck was kinked again. Obviously, I didn't continue the massage after this. But I think massage could be a very beneficial treatment for some babies. Or maybe we needed a different massage therapist? It might be worth a shot for you...

My naturopath recommends craniosacral massage for torticollis, but we haven't tried this yet, mainly because the chiro said it didn't work for her daughter. It's another treatment that I've read on torticollis support sites that some people claim really helps. You might try that as well.

And finally--tummy time, tummy time, tummy time. Do whatever you can to encourage your baby to enjoy tummy time. And limit his time in containers like car seats, swings, infant seats. Anywhere where his neck and spine can just be relaxed into their curved position and not have to work at holding up his head.

Please feel free to contact me if you need support or want to discuss this further. I tried to type in everything that I remember helping. Good luck and god bless!

I'd take my child to a chiropractor as well. I've worked in chiropractic for 13 years and have seen adults with torticollis helped but have never seen a baby. I talked to my boss and he said yes it would help. Muscles in that area can hold the spine in an improper position creating nerve damage, health problems, headaches, behavioral problems, etc.

I've had my daughters adjusted since day one, it wouldn't hurt to go to one and see what they say!

My niece had this. My sister took her to a chiropractor and followed up with physical therapy. My sister finally figured it out when she was about 3 or 4 months old and she did therapy and had adjustments (which she hated! screamed at) and did exercises at home for a year or so. My niece looks and acts completely normal now and my sister said it was so worth it. It was difficult for her to go through the crying at the chiropractor but it made a huge difference and she is so glad she had it taken care of at such a young age to promote healthy and normal development.

our middle child had torticollis, diagnosed early too. We went to physical therapy (highly recommend emmanuel hospital!!) for about a year. We did daily exercises with her and they explained everything very well. She's now 5, shows no signs of the condition, and is very coordinated (something I attribute to having all of the exercises when she was an infant).
A friend's son also had torticollis and had PT as a child. he also has had cranial sacral (sp?) massage that really helped him.
I think early diagnosis means your son will do well!

C., my son has torticollis, also on the left. He was diagnosed around 2 months and has been in PT since. Things are going very well. We go to Early Choice Pediatric in Vancouver and I highly recommend them.

We've been in PT every week since about 2 months of age. He began crawling at about 10.5 months old, and now he goes once a month. It starts in their neck, but actually affects their whole body as they grow. It's about strengthening and stretching...then they grow and it's about strengthening and stretching again.

I highly recommend you listen to your therapist and follow excercise and stretching instructions. My PT says this is a "noisy" therapy. So don't get discouraged. It is a baby's job to let us know when he is uncomfortable, and understandably, he will be uncomfortable during the exercises. However both of your hard work will really pay off.

Each thing they teach you will build on his next development. You will see! And, babies are smart. They hide little crutches they develop very well and you might not even know it unless you look carefully and are taught what to look for.

My PT said that Rowan had a "hard" case, and he developed very well and normally because we were good about our homework.

It sometimes takes convincing of family members when they are not allowed to do certain things with the baby they think they should be able to do. Don't let up on them either. Make sure everyone is working toward your baby's goal. When I slacked off on letting him stand too early for instance, it was a setback, and it was harder to re-train.

He'll get through it!

Hi C.... My husband is a chiropractor in Keizer. He has treated this condition infants in the past. We use an instrument called an Activator. We would be happy to evaluate your little man to see if chiropractic can help. Give us a call ###-###-####. We are just across the ferry and over the river from McMinnville.

C.

PS. I too am a medical transcriptionist, welcome aboard.

This is commonly found in girls who are first borns with hard deliveries. All 3 applied to my daughter. :)

We went through physical therapy from about 5 weeks of ago and I'd say it was a good 6-9 months of exercises that involved stretching her neck on the left side.

You will find creative ways of incorporating the stretch without your child knowing you are doing it. For instance, I would lay my daughter on her side while holding her, she faced outwards and her head would be cradled in my arm. This cocked her head enough that it provided a good stretch in addition to her exercised.

I can still look back and see that her face was underdevelped on that one side until she was about 4-5 yrs old. If you don't do the exercised, it will cause his face to not develop properly.

Hang in there mom ..... all will be fine. Just keep working with him and he will thank you later!

S.
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My son also had torticollis. He started PT at 3 months of age. He was assessed at Children's and we were given stretching exercises to do at home. We also went the cranial-sacral doctor several times. We saw improvement right away. We did a couple of follow-up visits with the Physical Therapist and were released from PT after 2 months.

One word of advice is to make sure that you do the exercises and do "tummy time." By the time my son was diagnosed with torticollis he had developed a flat spot on his head. The flat spot improved some once he had full movement of his neck and was sitting up more, but he still preferred to lie on the right side of his head. We are now working with the Children’s cranio-facial team and evaluating him for helmet therapy to address the flat spot (also known as plagiocephaly).

Good luck!

Hi C., My good friend's baby was diagnosed with torticollis. Physical therapy was GREAT! I think they didn't get started until closer to 9 months or so. She had other delays as well so i'm not sure how long the therapy lasted for this particular issue but her daughter is almost two now and looks and is doing great. I know she did lots of work but it paid off.

wow ya'll did catch it early!!! Just be very faithful in his therapy, Gage was diagnoised @ 3 months and it took about 4.5 months to fix it, his was pretty easy because all our other kids were at school, so we just made sure we used wedges kept his position where it it should be, even put the car seat on a different side so he was forced to look (well not forced, but it "encouraged" him to look out the window) we also put bright pictures up and used the water music machines they have for infants so it was not such a bore....
we also gave lots of baths w/one of us in the tub, so he could float and relax. have you asked your doctor about infant massage?
good luck, I hope he heals quickly, babies always seem to bounce right back!!

C.,
My twin girl was diagnosed with the same thing. We were lucky to catch it early as well. The physical therapy will be very good for him. The exercises will be very easy to incorporate into every day things you will do with your baby anyways so it doesn't take alot away from your day which was a blessing for me as I had two infants at the time. We were done with physical therapy by the time she was around 7 or 8 months old. Catching it early helps to fix it early. Good luck and God bless you and your family. :)

I have had two friends whose children had congenital torticollis. I don't know how long the physical therapy was but both children are 100% fine. and most of the therapy was pretty easy for them to do at home as well. God bless you

Its good that you are getting him physical therapy. I would suggest visiting a chiropractor as well. Sometimes during the birth process the baby's neck can be squeezed in such a way as to pinch some of the nerves. If his spine is aligned the nerve impulses can flow freely and just maybe the SCM muscle can relax and lengthen. It's worth a try- it can't hurt him.