Torticolis

I agree w/Mariah- the birthing process is so traumatic on the body- he's gotta contort to get out. It's no wonder. Try either chiropractic, osteopathic or cranial sacral work. If something is out of place his body will grow to compensate for it and it can lead to issues later. It's almost a reset so he can grow straight. It may be nothing but it's worth the 2nd opinion. Torticolis is commonplace for them.

My son was diagnosed with torticolis at 6 months. His head constantly tilted to one side and he had trouble turning his head to the opposite side. One side of his head was flat and his ears were uneven. I freaked out because immediately they told me to take him to Easter Seals for therapy. I did this and they did exercises with him and gave me exercises to do with him at home. I had to take him twice a week and it was costly. Then, someone suggested taking him to Dr. Ben Carson at Johns Hopkins. Dr. Carson is famous for separating conjoined twins and is one of the best pediatric neurosurgeons in the world. We were told that he knew a lot about torticolis. So, I called there and made an appointment. Two weeks later, we drove to Hopkins, met with Dr. Carson and felt much better. Dr. Carson told us to stop going to therapy and that we could do the same thing that the therapists were doing but in the privacy of our own home. In addition to the exercises, he told us to do as many activities as we could from the opposite side that he usually turns to. For example, if your child turns their head to the right all of the time, feed your child from the left so that he is forced to turn his head in the other direction. You can do the same thing with television. Place him on the floor so that he has to turn his head toward the tv which will stretch the muscles. The one other thing that he said to do was when you are holding your child, stroke his head where the flat spot is over and over again. This will help to reshape the skull. Most importantly, Dr. Carson did not agree with a child wearing a helmet in order to reshape the skull. He said that it should be a last resort if everything else doesn't work. Human contact is so important and being able to hold your child's head close to your heart without a big, bulky helmet is important.
I hope that this helps. I know that I was devestated when my son was diagnosed. But once I found out that it was correctable, I was relieved. He is now 3 and the only sign of torticollis left that you can see is that his ears are still not quite lined up. The flat spot went away and he has no signs of a tilting head. He loves to play sports and ride his bike (with training wheels) that he got for Christmas. Good luck and I apologize for my lengthly message but I wanted to share words of wisdom from Dr. Carson.

Hello. I know you have gotten lots of helpful advice, but as a massage therapist and mom I thought I would add one more. I have personally worked with a baby with Torticollis using massage techniques, and had excellent results. Some basic massage would enhance whatever your current treatment plan is. I work for a chiropractor who specializes in pediatrics and she has worked with several babies/children with Torticollis and had excellent results. I have known one case in which they ended up choosing surgery to cut the muscle, and unfortunately did not have much if any improvement. Here is a very basic technique you or your daughter can do on your own. Using her thumb with a bit of lotion/ massage cream and using firm pressure work down the SCM muscle that is effected. It will be slightly uncomfortable for the child, but this will lessen over time. If she could do this at least once a day for 5-10 minutes, it helps tremendously. Keep up with the stretches as well, they are crucial. This is very treatable with consistent treatment. I would highly recommend chiropractic care as well. The root issue is the muscle, however this greatly effects the vertebrae's in the neck. Hence the need to cover all your bases with massage, stretching, and chiropractic care. Some people are leery of chiropractic care and kids, but if you find one that specializes it makes a world of difference. Please let me know if you need a referral of any kind. I could also put you daughter in touch with another mom who has dealt with this and I am sure would be more than willing to share her experience. Hope this helps, good luck!

Betty,

My daughter was born with torticolis as well. We took her to the Shriners who fixed the problem. I met with the doctors and a plastic surgeon because her ear was a little deformed at the time. She is now 8 and perfectly normal. They showed me exercises to do for her neck and she also preferred her left side for quite a while. I would say that the arching of his back is not related to the torticolis. Personally, if this is something new then I really wouldn't worry too much. If this has been going on for a while then I would be concerned. Babies go through many phases and this could very well be just another phase. You could try and burp him in a sitting position instead of on your shoulder. Maybe he would prefer this better? You could even burp him lying on his stomach across your legs or in a football hold in your arms. Let us know if you figure it out! Good luck!

My son had torticolis and we just turned him to the left side at night per the doctor. Also, when he was swinging or sitting in his bouncy seat or whatever stationary position he was in, we turned him back to his least favorite side and his head rounded out. He is four and I can still see a slight difference in the side of his head, but this does not affect the brain, the doctors said. He was also a back archer. He started this as soon as he could move that way and kept being squirmy the entire time. He just wanted to get down and play and did not want to be held. He still doesn't want to be constrained. I do not believe they are related at all either. Just tell her she is a great mommy, she is probably exhausted and can not take criticism well. But, they do need to be checked out and have their physical therapy evaluated so maybe you can go with her to the doctor to do that. Best of luck we all want the best for our kids. No one can blame you for that.

This might sound taboo to a lot of parents, but with all of my kids I have taken them to a chiropractor when they were first born. My first son arched his back, laid on his right side, he even screamed when we would put him on a different side than the right. My doctor recommended taking him to a chiropractor, and instantly my son was a ton better. So after I had my twins, that was the first thing I did is have their backs adjusted. Between being scrunched up in the womb and being born, their backs and hips get out. Try it, it works!! Make sure that you go to a baby chiropractor. If you live in the Boise area, I have a really good baby chiropractor I could recommend.

Dear Betty~Five years ago, my husband's sister took one look at our then 3 mo. old son's Christmas picture and called my husband immediately to tell him that our son had this Torticolis. {She is a speach therapist}. No mother wants to hear negative things about their children, especially when they are first time moms because EVERYBODY has an opinion. My son was favoring his right side because that was the side he was laying on everytime I fed him {I had to formula feed him and having him on my left side was just easier for me} so he was prone to lean to the right. After her "diagnosis" I started switching sides everytime and he grew out of it. So, sometimes a lean is just a lean. Sincerely, A. J.

One of my twins arched her back as well. When she would sleep, she was arched so much that her head almost touched her bum. We honestly just thought it was because her sister had her head in her back in utero. She eventually grew out of it as months past and as an 8 year old now, is extremely flexible.

I am also a 36 year old woman with torticolis. When I was an infant, I don't think they knew much about it. I had surgery when I was three but by then alot of the damage was done. I never went through therapy. In fact, I just got a name for it a few months ago.

As a result, I have limited use of my neck, lean to the side, and one side of face is lower/smaller, even the ear/nose canals. It even effected the way my fingergnails grew.

I am very happy that it is so easily treated now days and these babies are getting to lead a normal life.

I too never saw your first request, but this is my story:

My son was diagnosed with torticollis at 2 months old. He had had a hematoma on his neck from birth. I guess because they had to use a vacuum to pull him out caused it it, I'm not sure. He didn't have the arching that I can recall.

Anyhow, we went to PT for about 9 months. He got better. We moved cross-country and didn't think anything about it. Didn't continue the exercises, weren't told to, he was better and didn't think about it.

Well, at about 3 years old we noticed he was doing it again. Not sure exactly when he started tilting his head again. We took him tot he doctor. They set him up for PT, had his eyes checked, etc. Nothing worked. We would keep going back to PT and finally when he was six he had the muscle release surgery and then PT. He's fine how. We still had to remind him to hold his head straight, because he's mostly only known the tilt and he thinks that's straight. It's been two years now and he's fine. the only thing is is that his ears are uneven and for a while his eyes were uneven on his face, but the eyes, I think, have adjusted but the ears have not. It's hard for him to wear sunglasses and stuff because they're always tilting from his uneven ears.

I would advise to keep up the PT if it's working and the home exercises even if the PT says you don't have to and if the tilt comes back to get it looked into right away and then maybe you can avoid the surgery. I think that if we hadn't moved and our lives hadn't changed by moving cross-country twice, then maybe I would've noticed it sooner the second time around and we would've avoided the surgery. His muscle was so fibrous that the PT wouldn't do anything. That's when he had to have the surgery. Luckily the PT and surgeon we have here were very good. I got a different PT then the first one we had at three years old (the baby PT was excellent too) because he didn't do much with him, I had to do the work and I didn't feel like I was doing it right. And we only had a couple of appointments with him and that's it. I shopped around for another PT and found one who is excellent and anytime we need PT for anyone in the family, we go to see him.

I wish I had thought of chiro then, it does wonders too. Not sure if you can use this method on babies, but it's very gentle to me, it's using an arthrostim rather than manua; adjustments and I like it a lot better than manual adjustments. Not a lot of chiros use it though or are good at it.

Good luck and I hope it all works out and you find ot about the arching.

Hi Betty,

My 6 month old son was diagnosed with torticollis when he was 2 months old. He too prefers his right side. We've taken him to physical therapy for the last 4 months - our last appt was last week! I didn't experience much arching in my baby's back at all. In fact when he was little he used to sleep with his head on my shoulder a lot - so he'd curl into me easily. I'm not an expert by any means, but I checked on webmd and they also don't mention anything about the back arching. Is your grandson in physical therapy? If so, it might be good to have it mentioned to the therapist. Even if it isn't related he/she can probably prescribe some activities to help it.

I have noticed however that now that my 6 month old is sitting up, he arches his back a little bit more. It seems he's working on his posture almost. If it is something new, maybe it's just a phase? I guess if it is something he's always had (with the torticollis) that I'd mention it to her to see if it should be checked out.

Sorry I'm not more help! Good luck!
H.

B.,

When my now 2 year old little girl was 3 months old, she was diagnosed with torticollis. I was told to work on her positioning to try and "cure" the problem, but obviously that did not help. The pediatrician refered us to a pediatric physical therapist and also a cranial facial doctor for her flattening head. I was absolutely devastated with this diagnosis, and actually posted on this site for help too!!!! There were so many days that were filled with nothing but crying!!! I felt so scared and stresed by the unkown. I then contacted the therapist and set up PT 2x/week for months. She then was seen 1x/week for months...this whole process was 10 months long with of course home exercises that we did at least 4x/day!!!! My daughter was also fitted for a TOT collar through our therapist. This is a devise that helps remind a child to hold her/his head in midline. This never worked for my daughter, because the collar never fit correctly...she was so small and had NO neck. After contacting the craniofacial doctor, I opted not to see him...I wish I would have though!!!! I was just so scared at the time and I guess I wanted to hear so badly that there wasn't a problem...and I was afraid that this doctor would want to helmet my child. Now, I wish I would have because my daughter has slight facial asymetrey due to the torticollis and flat head. We did take our daughter to an orthopaedic surgeon to rule out any boney spinal abnormalites, and also to have her hips looked at...for some reason tort babies can have weak hip joints. All of these tests were ok, so we just continued with therapy. This doctor did tell us that if she continued to tilt, even a 5 degree tilt, at the age of 2 that he would want to perform SCM release surgery. This of course totally freaked me out. He also wanted to do some botox treatments on her so that her therapy sessions would be better; however, her therapist did not think that she was bad enough for that...thank goodness!!!! Anyway, 2 years later she still tilts every once in awhile...only when she teethed and now when she is sick or going through a growth spurt. She does go back to midline after these boughts, so our ped has opted to just continue observing her. I know personally that this can be a very nerve racking diagnosis, so I feel for you and your family. Just try and get as much information as you can from your doctor and therapist. Through all of our tort journey, I have not seen my daughter arch her back though. So, I would speak to the ped as soon as possible to see what your next step in the process should be. I hope this helps...good luck.

Hello, I didn't see your original post, but caught this on the update. I just wanted to share with you. My son also had torticollis at 4 mos. He was so bad that his neck would lock, and it wouldn't move. After PT he would be a little better, and then it would resurface. We finally took him to a pediactric chiropractor. It turns out his first vertabrae was out of alignment, so severely, that it was causing this. The chiropractor knew immediately what torticollis was, and how to fix it. After the first adjustment, he was 100%, and then he went 3x a week for the first month to maintain it (their muscles have to learn to hold the vertabrae in place) and then monthly maintence, and my son has been perfect. I use Dr. Mick Mahan at discover chiropractic. His number is ###-###-####, and he adjusts my whole family, even my 2 mo old baby, and is so gentle. Good luck to you, I hope he is doing well.

Our little guy had torticolis until we got his reflux under control. If he's hard to burp, it wouldn't surprise me that reflux was the cause of both. It might be worth checking into, even if he's not a big spitter. Our little guy didn't spit up very much, but had very severe reflux. We never even had to see a PT for the torticolis. It took care of itself within a few weeks.

My baby had torticollis - diagnosed at about 4 months. He did not have any arching and none of the literature I was given talked about arching. It may be an atypical symptom - but I haven't heard of it. Is he going to physical therapy? If so, I would maybe ask the therapist about it to see if there is a correlation - or another problem. However, if you're not the one taking him to PT & the mom has a problem with you bringing things like this up, you may not have that option. Perhaps you could bring up your concerns in a way that would not come across as a judgment on the child or on her. Maybe just ask a question - "How is the torticollis treatment going? Do you think the way he arches his back has anything to do with his torticollis?" I would leave it at that. She may already know the answer. If not, you've brought up the possibility of a connection in her mind & I'm sure she'll follow through. I think it's wonderful that you are a concerned & connected grandmother.

Just an observation - Your daughter's sensitivity may have less to do with negative things brought up about her children and more to do with feeling you don't "trust" her to know what's going on with her own kids & to address them properly. Maybe go out of your way to tell her what you admire about her as a mother of her kids & tell her regularly what you notice she's really great at. As first-time moms, we may not always know what we're doing, and we certainly don't want our loved ones pointing out what we don't know. Even if that's not your intent, she may be taking it that way. Best wishes!

I don't know about the back arching, some of the other comments might be more helpful, but my son was diagnosed with Torticolis when he was 4 months old. We started doing the exercises, but didn't see much improvement. At his 6 month check-up the doctor noticed that his left eye was a little out of alignment. We were sent to a eye doctor who noticed that his eye being out of alignment was causing him to turn his head to focus. A little before his first birthday he had a simple eye surgery to just more a muscle in his eye. His torticolis is virtually gone now. Just another thing to consider.
It is hard when a mom thinks someone is teling her that her baby is less than perfect, but just reassure her that this is nothing that she caused and is treatable with time. Good luck!

J.

I would definitely talk to the doc about it. But...

My 4-month-old DS2 arches his back if he needs to burp. He doesn't have reflux or anything (though I did have to give up all dairy or he arched & cried fairly often). I sometimes have to work pretty hard to get him to bend, but I've found that if I bend him into a sitting position I can usually get out any residual burps. And after that he's usually fine. And much easier to hold. ;)

Best of luck!

I don't have a child with torticolis but I agree with the other mommies on the chiropractor idea. I have taken my son to our chiro and found out that his upper spine/neck was misaligned and may have been causing his ear infections. Since we have been going we haven't had any problems. I am not touting a cure all but if the spine isn't aligned the brain can't communicate with the body correctly. A medical doctor will almost never tell you to get the spine aligned, they only generaly treat a symptom not the cause. It's a non invasive, no pain, no drugs, alternative with many benefits. Just my two cents from someone who has seen the benefits of chiropractic care.

Hi, my 3 month old daughter had similar issues with her neck up until just recently. She also arches her back quite a bit. Our doctors are evaluating her for cerebral palsy because of the arching and some other things that she has struggled with since birth (poor suck, low muscle tone, etc). I am hoping my daughter's arching is acid reflux - she is also on medicine for acid reflux and while she doesn't spit up or anything she definitely seems to have more arching when she has gas or needs to burp. If your grandson is otherwise reaching milestones (holding head, grabbing things, etc), don't let my post and reference to cerebral palsy worry you but I did want to share my experience. I would say the torticolis is one thing, which he will grow out of with therapy, and the arching is likely gas or acid reflux. Good luck and I would love to know what you find out....

I didn't read all the other responses so I apologize if I'm repeating anyone else. My oldest was born 6 weeks early by c-section. He had the problems you described, and we took him to a chiropractor. She didn't actually do any adjustments or anything, but she held him by his bottom and tummy and let him move how he wanted. I wouldn't suggest trying this yourself, but after the first visit we noticed a drastic improvement. He ended up going in for about 4 or 5 sessions, and after that you'd never know he had a problem. I have no idea why that worked, but I would swear by it now! His doctor wanted us to put him through all sorts of physical therapy, but even he said that wasn't necessary after seeing the results!

Betty,

I do not know anything about torticolis, but it sounds like your grandson should have a developmental screening completed. It is recommended that all children have "1 before 2", the "1" being a developmental screening and the "2" being two years old. This screening can be done at any age, and the younger a child is when problems are caught the more beneficial interventions are. I am a special education teacher and can always tell the students that have had early intervention. I would talk with your daughter about this. Her doctor should be able to let her know where she can go for a developmental screening. In my area, there is a developmental preschool that does them. They are completed free of charge in accoradnce with Part C Early Intervention of the Individuals with Disabilities Education Act.
This would help get you some answers and there would be support for you and your daughter and family.
Best wishes,
M.

They diagnosed my daughter with torticolis when she was 3 months old and wanted me to take her to therapy. I took her to the chiropractor instead. He adjusted her neck. Then I took her to therapy and they said there is nothing wrong with her. LoL

If your daughter decides to try a chiropractor, make sure it's one that has experience with babies because they are adjusted differently than adults.

My daugther too had tortcolis but wasn't diagnosed until she was about 6 months. We had to do the helmet etc. She also arched her back. She was a month premature so they had blamed everything on that. At 6 months they realized it was more. The arching they said was because of the fact she was not in a fetal position since I am so tall and she was born so early and she hated her stomach. We had PT for her neck and to teach her to crawl and walk. We took her to the Chiropracter a few times also, mine recommended because of the sunction they used to get her out. She is almost 10 years old now. She is very active no visible signs except that she still turns her head to watch TV or sometimes even to see the basketball hoop if she is tired. We did all the tests with the eye doctors and there is no problems, it all stems back to the comfort zone of the Torticolis. We constantly remind her about the tilt which she then fixes but she slips right back into it the next time. So whatever you can do now for your grandson, I would highly recommend it. We were never told about doing any exercises at home, but I think that would have helped. She had PT 3 times a week. Good luck!