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Monday, April 12, 2010

When baby was about 1 month old, my mom noticed that she had a large bump on one side of her neck. Around this same time, the occupational therapist who made baby's wedge bed noticed that baby tended to turn her head in just one direction. So we took her to her pediatrician. He thought it was torticollis because the mass on the neck corresponded with her head turning in one direction. But just to be sure the mass wasn't anything else, he sent us to get an ultrasound.

The ultrasound people didn't think the mass on her neck was muscular. They said the tissue in the ultrasound didn't have the striped look the way muscle tissue normally looks. They thought that baby may need surgery to remove the mass. But they did say that they were used to looking at adult tissue and not infant tissue.

This had the pediatrician baffled because he was sure it was torticollis. The next step was to send us to an ear, nose, and throat specialist at Seattle Children's Hospital. After seeing her, the doctors there decided that it was definitely a classic case of torticollis, since they had seen the condition so often. They said that infant tissue looks different in ultrasounds as opposed to adult tissue, which is why the ultrasound doctor thought the mass didn't look look like muscle tissue. However, the ultrasound doctor did ask us to call them and let them know what the final diagnosis of the mass was so they could learn from the experience. I have yet to do that!

The ear, nose, and throat specialist then had us go to physical therapy at Seattle Children's Hospital. That seemed to help stretch out baby's neck and give her a greater range of motion. However, now at almost 6 months, she still has a preference to turn her head to the right and to tilt it to the left. I notice the turning preference when she is sleeping as well as looking around throughout the day. The tilting I notice mostly when she is sitting up.

I had seen a lactation doctor a few weeks ago, and she suggested we go to an osteopathic physician to get some cranial osteopathy treatments done to help the torticollis, as well as her acid reflux issue. I've been taking her for about 3 weeks now, and I haven't noticed any major changes yet. I've got one more treatment tomorrow, so I'm hoping that it will help.

I'm also taking her back to Children's Hospital for PT in a couple of weeks. They say that it could take a year to work out the torticollis, so I guess I have to be patient. Baby's PT gives me home exercises to do with her to help her neck. They are time consuming and baby doesn't really like doing them at all. But I just have to keep up with the exercises!


Article Comments

Comment By Littlethings
Friday, July 15, 2011 8:42 PM
Wow, I can't believe Carmen's daughter's torticollis lasted even up to 10 years old, and that she had to have surgery. I hope the surgery and physical therapy solves the problem.

At 21 months, Baby Bel still has a tilt to her head. I'm starting to do some exercises with her again. Since she doesn't like me stretching her neck, and she's a little to heavy to do the old PT exercises, I've started by tickling her neck on the other side to get her to stretch her neck the other way.

I'm also parting her hair on the other side to see if that gets her to tilt her head the other way, too.

Also, when I let her "ride a pony" on my lap, I tilt her body so that she tilts her head the other way.

I'm hoping these activities help. If not, I'll have to take her back to Children's Hospital to get some more advice.
Comment By Carmen
Wednesday, July 06, 2011 3:15 AM
My daughter is now 10 and has been suffering from this for ever.
We've brought it up with the GP and health nurse and it was always dismissed.
Then this year i brought it up again and then my GP refered me to a Prof. of Pediatrics and he operated on her yesterday, cutting the mussle to release it and future physio to look forward to.
I hope this is all worth it!!
Good luck!!!
Keep at it untill you come to a conclusion that your happy with.
Mother knows best!!

C x

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