Anyone who has experience with torticollis?

Sorry if this is a little long :) My son is 10 weeks old and was diagnosed with Torticollis at his 1 month checkup. I noticed about a week after he was born that he always turned his head to one side and tilted it toward the other ear. The ped said it most likely started when I was pregnant from his head being turned in utero and developing a tight neck muscle. The Ped sent me to a physical therapist, and we have been doing the PT and home exercises for about 4 weeks.

His range of motion with turning his head has definitely improved, but he is still showing a strong preference to turn his head to the one side. His head is a bit flat on his preferred side because overnight in the crib he is only on that side. Also I am noticing that his ear on the flat side is a bit further forward and his cheek is a bit bigger on that side. For daytime naps I put him on the other side in the Boppy (and supervise him obviously) per the PT's recommendation, but I am concerned about his night time sleeping. I wish I could somehow break him of the habit to automatically turn toward the "flat" side, but I am concerned to put anything in the crib with him to prop him, and the Ped told me to put him on his back only overnight bc of SIDS.

I am concerned that his flatness and facial asymmetry will continue to get worse unless I can somehow break him of this habit. I am religious with his exercises/stretches but I guess I was just hoping I would see a faster improvement and I thought he would start to turn his head to the other side in the crib. The PT is happy with his progress and said the flattening is mild and he probably won't need a helmet, but said we would re-eval when he was three months. She said unless the head flattening is severe, the decision to do a helmet would pretty much be up to me. Anyone have any advice/tips? Thanks.

Anyone who has experience with torticollis?

My DS had a flat spot but not torticollis. I suggest also seeing a pediatric neurologist. Depending where you live people on here can give great recs. I saw Dr Rosenn in Plainview. He was great. My DS flat spot went away once he started sleeping on his belly (4 months).

But the dr might suggest a helmet. Plenty of babies need them since we have to have the sleep on their backs. I know a bunch of friends that had babies with torticollis and all got better but it doesn't happen overnight. Just keep with the PT and exercises on your own.

Re: Anyone who has experience with torticollis?

My son had torticollis and plagiocephaly (flatness of the head). It was a long road for us but now at 2 1/2 you would hardly know. He was in PT from 3 months-2 yrs and wore a helmet from 7 months-1 year. He has some slight facial asymmetry but nothing anyone but doctors and I notice. My sons torticollis was pretty severe (almost needed surgery) but some suggestions that drs gave me were to feed him on the opposite side and to do as much as you can to have him look the other way. Put a mirror or light up toy in the crib so he has to look in the opposite direction. If you have any specific questions please ask! I've been through it all

Re: Anyone who has experience with torticollis?

Thanks- going to FM you.

Re: Anyone who has experience with torticollis?

My son had it, wore a helmet and did PT through early intervention. You would definitely not know today that he had it. I went to this place right over the GW bridge for the helmet, but I live in central Nassau. it was the only place close that had this type of helmet.....it was worn for a lot shorter period of time than most helmets out there. Here is the website:
http://www.cranialtech.com/

Re: Anyone who has experience with torticollis?

Thanks for your reply :) I'm glad to hear that your son has pretty much gotten rid of the torticollis and asymmetry. I am working really hard on his stretches and exercises and positioning, and it is improving, but I was hoping for more of an improvement by now. I guess it's only been 4 weeks of therapy, but I'm not the most patient person... After he was born he couldn't turn his head past midline on the tight side, but now he can (to a lesser degree on that side of course). Some days the exercises are tougher than others- is it normal to feel like it's a "two steps forward, one step back" type of thing?

I do try carrying him and feeding him on alternating sides and try to do things to get him to look toward the non-flat side. But in the crib it's kind of limited, even if I put a mirror or toy, because he can't turn his head easily toward the other side. If i manually turn his head to the non-flat side, he will just turn it back a minute later. I find it really frustrating! At least during his naps in the Boppy he will stay on the non-flat side, but the long stretch overnight (he sleeps 9 hours) makes me nervous because I know he is on the affected side so many hours. In your experience, as his neck movement improves will he start to go to the other side more?

Any suggestions other than what you already mentioned and to continue with the PT and home exercises? I'm not sure how I will decide whether to do the helmet if they leave the choice up to me.

Posted by Jillianm08

My son had torticollis and plagiocephaly (flatness of the head). It was a long road for us but now at 2 1/2 you would hardly know. He was in PT from 3 months-2 yrs and wore a helmet from 7 months-1 year. He has some slight facial asymmetry but nothing anyone but doctors and I notice. My sons torticollis was pretty severe (almost needed surgery) but some suggestions that drs gave me were to feed him on the opposite side and to do as much as you can to have him look the other way. Put a mirror or light up toy in the crib so he has to look in the opposite direction. If you have any specific questions please ask! I've been through it all

Re: Anyone who has experience with torticollis?

You caught it reeeeeally early. That's great. We had DD in physical therapy for torticollis when she was about 10 weeks old too. She "graduated" at about 7 months and never needed a helmet, even though they said "maybe" in the beginning. She improved like crazy from week to week. I was religious about exercising her - so hard to do when she screamed and carried on, but I had to stay strong for her.

Besides that, though, I did PT on her pretty much all the time when she was awake. I NEVER had her lying on the floor or in a swing if I could help it. Never. Only when she slept. She was always upright or on her tummy. I think this really helped: I sat her up on my lap, my hands on her ribcage to stabilize her, instead of holding her in my arms, when I was chatting with other moms or was watching a little tv. I made an "L" with my fingers and kept her head from tipping to the side with my pointer and middle fingers (my thumb rested by her shoulder blade). So she'd be sitting up, with her head straight, and we'd do it for hours a day. She was good at "sitting" like that on my lap from the time she was 3 months old, because I did it so often. She could sit against couch pillows at 5 months and sit without support by 6 months. That was when her head became perfect.

Having a newborn is hard, and having a newborn that you literally aren't allowed to put down? Is ridiculous. You're doing a job that very few moms of newborns have done or can understand. But it's worth it. You're doing a good thing. A great thing. Keep it up, and good luck.

Message edited 1/27/2013 9:21:10 PM.

Re: Anyone who has experience with torticollis?

It definitely felt like 2 steps forward 1 step back for us. I really started to see more of an improvement once he could sit up on his own. His orthopedic surgeon told me that although the passive exercises (stretching) is very important, the active stretching (when the baby moves on his own) was when you see the most improvement. So I would try to sit him up or tummy time as often as possible and if he needed to be in the bouncy seat I would put his right side (favored) towards the couch or the wall and toys or the TV on his left side. About the helmet, his flat spot was not going to correct itself as it was pretty severe and the neurologist said it would be best. I'm so glad we did it! His head is not perfect but it is not recognizable. My son also probably started with torticollis before he was born . . He was born at 33 weeks and spent a few weeks in the NICU so when he finally came home, his neck was the least of his problems but when I look back at pictures his neck was ALWAYS in the same position. I hope this helps! My son still tilts a bit when tired or sick, which the dr said is normal but I think he looks great!!

Anyone who has experience with torticollis?

We have also experienced torticollis with both twins. My Twin A needed also the helmet because of placiocephaly which usually goes hand & hand many times. He had the helmet for about 10 weeks. As far as the torticollis goes, My Twin B son had a pretty tight neck & didn't actually keep straight until about 7 months. PM with any questions. I highly recomend Early intervention though. Call them for a evaluation

Re: Anyone who has experience with torticollis?

My DS had torticollis as well. He also developed flat side and wore a helmet for nearly 5 months and had PT.
We had the same physical issues... one cheek fuller, ears a little bit misaligned. You would never know this now.. only I can really still tell.
You're doing all the right things to correct the problem. If you're concerned about the flatness, I would have an orthotist check him out. I have a great one in Merrick who took care of our son.
FM if you have any questions!

Re: Anyone who has experience with torticollis?

You caught it real early so that is great. DS had torticollis and a flat spot. He qualified for early intervention and we were able to have PT done at the house, twice a week. He wore the helmet for almost 4 months and had PT for 6. If you would see him now you would never have guessed he had anything.

If you need recs for the helmet please feel free to FM me. They have locations in Long Island and Queens

Re: Anyone who has experience with torticollis?

Thank you so much! This is exactly what the PT told me today :)

Re: Anyone who has experience with torticollis?

Thank you everyone for the info- the PT today said to wait until he is 4 months before thinking about a helmet bc that's usually when the neck muscles start to get stronger and it's very possible his head could round out on its own. I'll keep my fingers crossed, but if he does need the helmet I'll be sure to get your neuro/helmet recommendations. We didn't quality for EI because he was too young, but if in 4-6 months he's still in PT I could apply for another eval.

Re: Anyone who has experience with torticollis?

One of my twins had torticollis and the other had plagiocephaly. We wound up going the route of a pediatric chiropractor. Dr. Adam Glassman - he's a business on here - really changed everything for both of our babies. He came highly recommended from a family friend and we weren't disappointed. He was completely honest and gave us an upfront assessment on our initial visit, telling us it wouldn't change over night but if we stuck with it, we would notice the change. You can't tell either of them ever had an issue now. I don't know what they do in PT vs what Dr. Glassman does, but the one thing I hear with PT that you have to do exercises on the babies at home. I never touched either baby's neck or skull for a massage or anything at all. We went to Dr. Glassman 2-3x/week for 2 months and noticed a huge change. Just something to consider as an alternative before you think about a helmet. Good luck!! :)