Torticollis...Anyone with Personal Experience?

[bengalbelle]

Several days ago we noticed my daughter was leaning to one side in her swing and also leaning her head toward the same side when upright. We thought it was odd, so I mentioned it to her pediatrician at her 4 month visit today. He said he noticed it when he looked at her.

He said it was Torticollis and her muscles were stronger on one side than the other. He made it sound like it was no big deal. He ordered a cervical spine x-ray (haven't heard back from that yet) and referred us for physical therapy.

I thought I'd educate myself and google it, and now I'm worried (though I should have known better!). Does anyone have any personal experience with it? Our PT eval isn't for another week.

 

[disneymama73]

Yes, my niece has it and goes to physical therapy. It has improved greatly!

 

[Nicsmom]

Yes, my son had it when he was an infant. We noticed it when he was 2 months old. We noticed that he would only turn to the right when he nursed. We took him to physical therapy once a week until he could crawl. It really is not big deal if she goes to PT. If not, she could have trouble crawling, turning over and walking. This is what the therapist told me. Not sure how accurate that ifo was. Scared me a bit. My DS is 2 now and you would never know that he had this condition. He never had an xray like you daughter. I'm sure that your doctor is cautious. Try not to worry. If you have questions, feel free to ask.

 

[cgcw]

We went through this with our DS. I also noticed when he started sitting up in the stroller that he leaned to the right side. So, I mentiioned it to the pediatrician who sent us on to a neurosurgeon because due to the torticollis, my DS also have plagiocephaly (flatter head on one side). They quickly ruled out a medical condition and sent us on for physical therapy. We started the PT at 7 months and continued with twice weekly, and then weekly visits until he was 14 months old. It helped a lot. We also had exercises and stretching which they taught us to do with him at home.

I won't tell you it was easy. My DS hated the exercises and faught us to the point where DH & I had to hold him down at the same time --- it's amazing how strong a toddler can be when they are trying to get away from an activity.

They also made a collar for his neck which was similar to a brace yet made of flexible tubing. He wore this during his waking hours so that the muscles would be forced to strengthen.

Whether it had anything to do with it, our DS had tubes put into his ears at 14 months due to repeated ear infections which started at 6 weeks. Once the tubes were in place, the neck straightened out. Our ENT told us there had been studies done on torticollis and that sometimes the fluid will make a child off balance. Obviously, I'm not a doctor but in our case, the tubes seemed to help a lot.

Best of luck. Today, you wouldn't know that my DS had any problems.

 

[momrek06]

Several days ago we noticed my daughter was leaning to one side in her swing and also leaning her head toward the same side when upright. We thought it was odd, so I mentioned it to her pediatrician at her 4 month visit today. He said he noticed it when he looked at her.

He said it was Torticollis and her muscles were stronger on one side than the other. He made it sound like it was no big deal. He ordered a cervical spine x-ray (haven't heard back from that yet) and referred us for physical therapy.

I thought I'd educate myself and google it, and now I'm worried (though I should have known better!). Does anyone have any personal experience with it? Our PT eval isn't for another week.

OP, I have never heard of it, but just stopped in to say your children are beautiful and I will pray your DD is fine. WOW, she is just A D O R A B L E!

 

[bengalbelle]

Thank you all for the quick replies. Caroline is also turning to the right side, and her head is flatter on that side. I just attributed that to the fact that sleeps a lot. I honestly never noticed the leaning until just a few days ago, so I don't know if she's had this all along.

The few articles I glanced at mentioned masses and a worrisome diagnosis. We've had a medical scare with her before, so I couldn't read any farther. It sounds from your replies that it really isn't a scary thing.

She had a CT Scan, EEG, spinal tap, numerous blood cultures, and evals by a Neurologist and Neonatologist at 1 week old, so hopefully any neurological causes were ruled out at that time.

One of the reasons I googled it was to see if the types of exercises she'll do in PT were mentioned. I'm just curious what they will do with a 4 month old.

 

[bengalbelle]

OP, I have never heard of it, but just stopped in to say your children are beautiful and I will pray your DD is fine. WOW, she is just A D O R A B L E!

Aw, thank you so much

 

[katerkat]

Russ had it - I believe his was to the right? His head leaned right, that is. According to his PT, he had both a lean, and couldn't turn his head very far. (Two different diagnoses.) Anyway, he was diagnosed by my sister (a PT) at about 8 weeks old, officially by a doctor at 2.5 months old and finally started PT when he was 5 months old. At five months, he was testing 2 months behind in skills because of the torticollis.

We did PT twice a week for a month, then every other week for a month, then once a month three months, then he graduated from PT at 13 months old. At ten months old, he was testing "at or above" his age level in skills. I attribute it to getting him to PT fairly quickly.

One suggestion, if she tilts badly in the carseat, is to find a positioner like this: http://www.buybuybaby.com/shopping/...17&MainCatID=2&catID=35&sl=0&productID=152618.

Russ also had a flat, bald spot on the back of his head, but it went away as he sat up more and grew stronger and used his head properly.

As far as I was told, there's lots of theories on why torticollis happens but no real determination yet.

 

[Nicsmom]

Sounds like your little one has been through far too much already. Hope this is nothing more than tight neck muscles. To answer your question about excercises. His PT stretched his neck a few different ways and showed me how to do it at home. As someone else said it's not pleasant. They don't like it. My DS would cry but I had to do it. My DS was younger than your DD. Does she flip over yet? My son did not when we started. So that was the first goal to get him to flip over tummy to back and back to tummy, right and left sides. When he mastered this, it was off to crawling and sitting up. Now that I think of it. He liked most of the PT, just hated the stretching.

 

[katerkat]

When we started, she mainly did stretching exercises and things to get him interested in tummy time. Russ also wasn't all that happy about the stretching, but he got used to it. Once he got more mobile, the exercises got more fun.

This was his three month picture

This is one year

Big difference in the tilt!

 

[bengalbelle]

Caroline will be 4 months tomorrow. She's been rolling from side to side for about a month. She has rolled from back to tummy 4-5 times. She lifts her feet and upper body and just kind of plops over.

She's rolled from tummy to back once. She was really mad about tummy time and just kind of flipped over. She hasn't done it again, so I'd say it was an accident. I haven't read the baby books as faithfully as I did with my first, but I think she's on target with milestones so far.

The picture of her in the blue dress is on Thanksgiving day. She was just 3 months old there and a few days older in the picture with my son. Looking back the tilt is there, but I didn't notice it until it became more pronounced.

I'm glad we figured this out while she's still pretty young and got her into PT.

Thanks again, and I'm glad all of your children are doing well

 

[bengalbelle]

When we started, she mainly did stretching exercises and things to get him interested in tummy time. Russ also wasn't all that happy about the stretching, but he got used to it. Once he got more mobile, the exercises got more fun.

This was his three month picture

This is one year

Big difference in the tilt!

His eyes are gorgeous!

There is a big difference between the two pictures. He is such a cutie!

 

[LadyyRedd]

My best friend has it. If you need someone to talk to directly about the experience of having it, please feel free to PM me and I'll get you two in touch with each other.

Kimya

 

[mom2boys77]

my son had this when he was a few months old..the dr. was not concerned at all and really she was no help so I researched it for myself. What worked for us was to put him on the floor on his belly and talk to him or use a noisy toy to get him to turn his head towards the noise or voice. I did this a few times a day and it worked! He never had physical therapy or anything! Good luck! Barbara

 

[Buckalew11]

My niece had it and they did PT and she is fine. She does gymnastics and I am sure this has continued to strengthen her muscles.
Best wishes to your DD. She is beautiful!

 

[mariolatry]

My daughter was diagnosed with Torticollis when she was 8 weeks old. My husband is an MD and noticed a lump in the left side of her neck. I'm an occupational therapist and noticed the muscle imbalance.

She was in PT by the time she was 12 weeks old. The best thing for it is tummy time! When they are on their backs, the roundness of the back of their heads makes the head roll to that same side. Tummy time and proper positioning (making sure not to let the head go to that side) took care of about 75% of it. The exercises and PT took care of the rest. By the time she was sitting up on her own, she looked pretty much normal.

 

[tiggerlover]

I had a problem with this last year and I have to say that it is very painful and when I was "educating" myself online I was down right scared from the information I found. But with therapy for several months the pain went away and my head straightened itself back to normal. The only time I know I have a problem is when I get very stressed and then I can feel the nerves in my neck pinching and so far I have been able to head off the painful stuff of last year. I didn't realize it was so prevelent in children until I read your post. Good luck with your daughter, with the right treatment I hope you have postive results.

 

[bengalbelle]

My daughter was diagnosed with Torticollis when she was 8 weeks old. My husband is an MD and noticed a lump in the left side of her neck. I'm an occupational therapist and noticed the muscle imbalance.

She was in PT by the time she was 12 weeks old. The best thing for it is tummy time! When they are on their backs, the roundness of the back of their heads makes the head roll to that same side. Tummy time and proper positioning (making sure not to let the head go to that side) took care of about 75% of it. The exercises and PT took care of the rest. By the time she was sitting up on her own, she looked pretty much normal.

Wow. What a beauty your DD is!

Positioning is a major problem for us. She sleeps in a Tucker Sling so her movements are very restricted when she sleeps. She often repeatedly moves her head from side to side trying to get comfortable. Maybe the sling is contributing to the problem? I know I've been warned about possible developmental delays due to her not being able to move around/turn over while in the sling.

 

[bengalbelle]

My niece had it and they did PT and she is fine. She does gymnastics and I am sure this has continued to strengthen her muscles.
Best wishes to your DD. She is beautiful!

Thank you

 

[bengalbelle]

I had a problem with this last year and I have to say that it is very painful and when I was "educating" myself online I was down right scared from the information I found. But with therapy for several months the pain went away and my head straightened itself back to normal. The only time I know I have a problem is when I get very stressed and then I can feel the nerves in my neck pinching and so far I have been able to head off the painful stuff of last year. I didn't realize it was so prevelent in children until I read your post. Good luck with your daughter, with the right treatment I hope you have postive results.

Thanks for the adult perspective. I hope you don't have any more problems with it!