Infant Torticollis

[Wait4It..boom]

Dr. Spatz is great. My son had the condition when he was an infant (the pediatrician caught it early and the exercises I was told to do at home thankfully reversed it). A friend of mine wasn't so lucky and her son had to wear the helmet for quite some time. His ears still don't align but he's doing well. Those helmets are not cheap!

 

[MargeInCharge]

Yes, my daughter was diagnosed when she was 2 months old. She went to therapy in Laurel (14 years ago they were the only pediatric physical therapists around.. I can't remember the name of the place off-hand). At first she went once per week, then once per month until she was about 8 months old. Her head was tilted to the left, her neck muscles were very tight on the left and very loose on the right.

I did exercises with her several times per day, I remember holding her on one leg and bouncing/leaning her to her left, and she would try to lift her head to the right, which strengthened the muscles on her right side. She always enjoyed this as it was just "play" to her.

Twice a day I would lay her on her back and do the left side stretching exercises, by gently pulling her head as far as it would go to the right, while massaging the left side. She didn't like this as much, but I'd try to distract her with singing, etc, but it was never a big deal. I don't remember her crying during it, just fussing.

Have you had your daughter checked for dislocated hips? My daughter was also diagnosed with this 2 months later, when she was 4 months old. I only bring this up because most babies with dislocated hips also have torticollis, they seem to go hand in hand. And it is MUCH more common in girls than boys.

We saw an ortho at Georgetown, a Dr. Delahay, and he was wonderful. If he is still practicing, I highly recommend him.

Good luck to you! I know how scary it is having to deal with this

 

[MargeInCharge]

I just realized how old this posting was... duh!

 

[bohman]

Thank you all for the replies. Our 3 month old now has a PT appointment with Jennifer at Novacare (this is terbear's husband). We are starting to get a handle on this. I found it interesting that as I look at online pictures of other babies with torticollis, it seems like all of them have much more of a tilt than our boy. Almost all the parents talk about degrees of tilt, but I guess our boy just has a mild case - he simply wants to turn his head to the left. There is no tilting for him.

I really want to find a way to get more of this information out to new parents, because I'm feeling guilty. We noticed right away the he always seemed to turn his head to the left when sleeping, but we had no idea that it might be a problem - so we never mentioned it to his doctor. He's a cheerful, healthy boy; there's never been any pain in his neck or anywhere else. I've never heard the word "torticollis" till 3 days ago, and the only reason we got that diagnosis is because he visited a specialist for something else. At the very least I need to tell his pediatrician to start looking for the condition, and start asking other parents if their children have a "preference" for which way they turn their heads.

When are we going to get that "owner's manual" for babies, anyway? Somebody needs to write one.

 

[JabbaJawz]

Wow, it's been a while!! My daughter actually ended up having several braces made as an infant in an attempt to 'crank' her neck in the right direction. She had a terrible left tilt, but also only turned her head to the left. The braces were made by Children's and she wore each for a month or so. She wore this and also had PT 2-3x per week. By the time she hit 11 mos., there was not the improvement they were hoping for, so she had surgery to cut the muscle that was hardened and causing the problem. After the surgery she continued PT and now at the age of 4 is good to go.

She had a very severe case and it did take months for her left eye (the crooked side) to open as much as her right one. Torticollis affects so much more than just the neck, per se, so the long-term affects can be devastating if left untreated. Basically the left side of her face had not grown and been utilized as much as the right side, so there had to be a catch up period. They had actually said then (when she was about a year old), that it could take until she was 4 or 5 to see a total change.

Also, when I feel the back of her head I can feel that it is lopsided (and will be forever) from the torticollis. No one will ever be able to tell because of her hair, but I can feel it underneath.

 

[Wait4It..boom]

When we found it in my son, it was Dr Sheth that caught it very early on. We quickly realized that we had been putting my son in his swing that was next to the chair we sat in beside him (which was the way he turned his head so he could see and hear us). We reversed the swing to make him have to look at us from the other side. It was difficult for him at first, but it helped along with the at-home therapies we were doing.

 

[barncat]

My 6 month old has been diagnosed with torticollis. Children's wants him to do Physical Therapy once a week and may possibly go to once every two weeks, depending on how he's progressing. His case is not sever, but theraphy is required and we have to go back to Children's in 3 months for a follow-up visit. I received a call from the Upper Marlboro branch of Children's where he will receive his PT but they cannot get him in to start PT until January, no date yet, they said they would call when they had something. Does anyone know of any PT offices that treat infants in the Waldorf area? Waldorf would be more convenient, but if we had to we could drive down into St. Mary's or Calvert. I grabbed the PT names from the thread, but if someone can recommend someone in the Waldorf area that would be helpful.

Thanks!

 

[CRHS89]

My 6 month old has been diagnosed with torticollis. Children's wants him to do Physical Therapy once a week and may possibly go to once every two weeks, depending on how he's progressing. His case is not sever, but theraphy is required and we have to go back to Children's in 3 months for a follow-up visit. I received a call from the Upper Marlboro branch of Children's where he will receive his PT but they cannot get him in to start PT until January, no date yet, they said they would call when they had something. Does anyone know of any PT offices that treat infants in the Waldorf area? Waldorf would be more convenient, but if we had to we could drive down into St. Mary's or Calvert. I grabbed the PT names from the thread, but if someone can recommend someone in the Waldorf area that would be helpful.

Thanks!

You can also get PT through your local Infants and Toddlers Program. You may not get in any sooner, but it may be more convenient. Just a thought.