Torticollis

hjoy_06 · November 2013

One of my twins (bottom baby) was born with torticollis. We did physical therapy with him and he "graduated" but we still notice a slight tilt in his head that seems to get worse when he's tired. We mentioned this to his doctor at their 9 month appointment yesterday and he suggested a different physical therapist that would work closely with a specialist that could do surgery on his neck if need be. Obviously that freaked me out a little. Is there anything else that people have tried for torticollis. I was thinking maybe a chiropractor and we are going to continue the stretches PT told us to do but he's getting stronger and it's getting more and more difficult. I'm looking for more ideas as well.

mommytoconnor · November 2013

My son had this at 4 months old. I did the stretches and massages at home, I lucked out and never had to see a PT and it went away quickly. I would definately follow up with another PT but have they considered a helmet? they use this for plagiocephaly (flat spot on the head) but often times the two are linked and if they have torticollis they have a flat spot. If so, a helmet might help.

realisticdreams · November 2013

hjoy_06 said:

One of my twins (bottom baby) was born with torticollis. We did physical therapy with him and he "graduated" but we still notice a slight tilt in his head that seems to get worse when he's tired. We mentioned this to his doctor at their 9 month appointment yesterday and he suggested a different physical therapist that would work closely with a specialist that could do surgery on his neck if need be. Obviously that freaked me out a little. Is there anything else that people have tried for torticollis. I was thinking maybe a chiropractor and we are going to continue the stretches PT told us to do but he's getting stronger and it's getting more and more difficult. I'm looking for more ideas as well.

Torticollis is either positional in orientation or neurological. I do remember something being vaguely mentioned about a surgery with the muscle in the neck that can be too tight. We saw a neurologist about her tort when dd1 was younger and also a neurosurgeon (because she had plagio/brachycephaly).
Honestly, if the tort isn't resolved and the baby is 9 months old that would kind of be a red flag. Even without PT typically once the baby is more mobile the tort will resolve. I would see the new PT but you should also ask about seeing a neurologist.
Good luck.

Assembly_Reqd · November 2013

Despite doing all the positional changes and stretching, Nate still has it (see pic below).

I will say that I was doing a lot of therapies with him so the tort really got the back burner.

His neck is short anyway and super short on that side. He also has really tight tone in his chest and shoulders. My guess is his is both positional and tone(brain). I also had low amniotic fluid that was discovered at the end of the pregnancy.

Tort can also be vision related, so you may want to see a pediatric ophthalmologist before hitting up a neuro to rule out any vision issues. Some children focus better when they tilt.

Nate's ophthalmologist made me feel a little better about it because he said most people position their head with a tilt during conversation anyway. I think he looks sorta contemplative in his school pic below.

realisticdreams · November 2013

Thumbs up to Assembly for recommending eye doctor, I had forgot about that being a possible cause!!

Happy2bNappy · November 2013

I thought DS had torticollis up until he was about 10 mths old. We started PT but only for a short time because I noticed his tilt got worst after every session plus the stretches etc were not helping. What baffled the therapist was his tilts would sometimes switch sides and sometimes they went away altogether. His pediatrician at first thought this had something to do with his hearing loss and not having his hearing aids.

It was not until his 2nd birthday party, he was tilting so bad he was off balance and he just was not his regular self (not cranky just quieter). I took him back to his pediatrician who had another patient with the same complaint and was diagnosed with Benign Paroxysmal Torticollis (BPT) and referred us to a neurologist. The neurologist told us it looked like BPT but he wanted to do an MRI to rule out anything else. We opted not to do the MRI because I hated having him under anesthesia (again) as well as It was pretty much confirmed by the pictures I saw and the symptoms discussed by other BPT moms on another forum.

DS used to tilt when he was coming down with something, or when he was teething, and like your DS when he is tired. Now he only tilt when he is super tired and most times a nap usually does the trick (wasn't always so)

This condition is neurological, most children will outgrow it by age 5. It is seen where children with BPT, one or both parents are migraine sufferers.

There is a FB group for BPT parents that group has proven to be very helpful even to parents like you who is not sure what is going on as of yet. This is a closed group but there is also an open group for friends and families of BPT children.

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