Seeking Advice on Treatment of Torticollis

Hi S.. My son was diagnosed w torticollis at 2 months as well. Cannot recommend enough doing the PT! Especially starting her at this age when she won't fight you. We went through Lucille Packard Stanford. Amazing PTs. They will work with her in the beginning, follow up but the majority of the work will be the exercises you do w her at home. EXTREMELY IMPORTANT! We noticed a difference after even a month! Keep it up until she will allow you to stretch her. I think I did it until he was almost 1. Now, we hardly notice it. Sometimes he still tends to lean to one side when he is sick or teething. The PT said completely normal as is it's like a comfort position. It's a lot of work, but necessary! Oh, and he did not have to do the collar because we started the PT ASAP. Good luck!

My daughter had it,too. We had a great outcome, largely because we began treatment with a great PT very early (8 weeks, I think. Hound your doc for the referral! Be diligent about the exercises and your daughter's neck will straighten out.

I haven't had experience with this, and didn't even know what it was when reading your request. After looking it up online, I find I was familiar with the name commonly given when I was growing up - "wry neck" - but still have no experience with it. I would agree just from what I've read, that the treatments that are being recommended to you will most likely work, but that you need to be consistent with them.
I just want to comment that another great benefit of Mamasource is that we learn a lot of things we didn't know before. Knowing about this condition may happen to come in handy to me someday, but even if it doesn't, it's interesting to know.

Dear S.,
My friend's granddaughter was born with this condition. Her doctor said it was due to her position in the womb. They did physical therapy and the collar and worked with her at home as far as her positioning, which side they had her lay on, massage, etc. Her situation was pretty severe. Her head was literally down on her shoulder as if the two were attached. However, she never required surgery or anything and the good news is that she is a super cute, bright, happy and healthy little kid. You'd never know she had any of those issues.
She was diagnosed right after birth and the whole family diligently worked with the doctors and their diligence paid off.
Hang in there and hopefully you will be able to find a good physical therapist that deals with this and can help you with the proper things to do at home.

Best wishes!

Dear S.,
My daughter also has torticollis, a moderate to severe positional case, measured at 20-28 degrees. I offer this email to you as a personal experience and wish I had better information early on.

Early PT is so important as is Tummy Time and positioning. No reason to delay PT. If the condition resolves quickly you have less PT. My daughter's condition worsened from 1-4 months while her pedi doctor wanted to be convinced she was severe enough to require treatment/PT. We were told to reposition her, in crib and car seat etc, and did so, but this clearly was not enough. By ~4 months her torticollis resulted in plagiocephally (head mishaped due to shortened-tight neck muscle/tone)and she later wore phases of helmets (like a bicycle helmet, but called "cranial remolding band-STAR Band"). Switched her Pedi Dr to another, a much stronger advocate for treatment. We still work on PT, with a custom collar and a home stretching program, but are now done with helmets by ~14 months. Still tight but she has progressed to ~5 degrees of tilt, or ~10 when tired. So stretching definitely works!! Our TOT collar was of limited value (flimsy plastic surgical tubing-she wanted to teeth on it)but better than nothing, it's what we started with before moving to a custom firm fitted collar. Her collar now serves as a reminder to hold her head upright when she reverts to tilting.

My advice is to work with an experienced peds PT/OT,now, as sooon as possible. And request a referral to Physiatrist (doctor of physical medicine) who can properly diagnose "severity" and who will follow (and MEASURE) progress with your PT. But don't wait on the PT. Once we made connections with therapists it was a tremendous help. Specialist referrals and insurance authorizations can take months so request it ASAP. If condition adequately resolves before your specialist apt. cancel it then. If not resolved or severity increases it's time to seek more help. We were also offered Botox treatment by one specialist which we declined- too many possible side effects close to the heart. Without significant progress or resolve before 2 yrs old it's recommended to have a surgical release evaluation by a pedi orthopaedic surgeon. A bit scary but if progress is good no surgery is warranted. So we keep up PT/stretching and hope this will be the "resolve", with no surgery later (up to 7 yrs of age). Every baby responds individually so it's good to have this monitored by Drs in consultation with PTs.

Our early PT was provided free under a First Five-Early Start Program with our local Office of Education (SELPA- Special Education Local Plan Area. They contract with a Peds PT/OT group who specializes in torticollis treatment and came to our home 2x week, mostly to train us how to stretch her. Our therapist had 17 other current torticollis cases so she was very helpful in advocating on my daughter's behalf and had the experience to identify the severity concern. Again, PT is really important EARLY and may resolve conditions quickly for milder cases. Given all of our delays in scheduling with professionals we started a PT program at 4 1/2 mo. and I feel our treatment time may have been significantly shortened if we had started ASAP at birth when it was obvious and when we raised the concern.

Hang in there. All things considered we've been very blessed with a beautiful healthy baby girl and we try not to get too worked up about all of the torticollis intervention. It's a lot of hard work but our daughter takes it in stride, responds well and we're making good progress. Hope this helps and best wishes for a speedy resolve for your baby girl!

My sister had that when she was a baby. she is now 45 and fine. they did excercises when she was a baby but by the time she was 2 or 3 it was not noticable or an issue
J.

There is a therapist in Sacramento that is absolutely amazing. In one visit she can turn things around. I've been taking my baby to see her and she has done more in just a few visits than over 1 year of physical therapy. Lactation specialists won't even see babies until they've seen this therapist because most of the time latching on is a neck problem as well.
She has 2 clinics. Her number is ###-###-#### Judy Terwilliger
People bring their children from hours away to see her. It's worth it.
Blessings,
C.

Hi S., let me tell you, you are not alone with this. My daughter is 6 months old now and she was diagnosed at 3 months. We did physical therapy with her for 7 weeks. It's all really simple, just takes commitment and time from you. Her PT did stretches and exercises to help her have more flexability and strength in her neck. Because it was caught early even if it's sever it should be manageable. I did find a donut pillow on the internet, it was like $30, but didn't get it because my child was already rolling onto her side at that point. Just make sure when she sleeps that you adjust her head so that her head doesn't end up misshapen, even it is, again she is young enough to fix it. Good Luck.

My son was diagnosed around 8 weeks with a mild form of torticollis. We went to PT and she showed me how to do it at home daily and his condition improved dramatically very quickly. It did get 'stuck' at one point, where even with continued home treatment that last 10% of his condition didn't seem to improve so I went back to PT and his muscles had changed so she had to show me some new exercises. Again, after a short time doing the new ones his condition improved and he was totally fine soon. Good luck!

Hello S.,
My son did not have torticollis, but my son did have Plagiocephaly (flat spot on head) which often goes hand in hand with Torticollis.
I know there is a torticollis web group that I've heard thru my on line group for plagio is very helpful. It is run by moderators who have been thru the treatment and has tons of resources to help you with getting thru the process.
I would also advise you to be very careful with the placement of your babies head when sleeping or having her laying down to help avoid plagio (a flat spot) and I believe the tort group can help you with suggestions (from real mom's going thru it) on ways to do that with the tort.

Good luck! and you're very lucky to have a diagnosis so early, I give your dr. a lot of credit for that.

K.

Sorry I forgot to add that both groups on are Yahoo groups and are free to join. The groups was INVALUABLE to me, I was also asked to be a moderator but haven't had much time on that lately. I highly recomend joining a support group because honestly there is nothing like talking to mom's who are going thru the same thing, who have experience and who might have treatment recomendations to discuss with your dr.

My twin that was head down had torticollis. We did the pt ourselves and she is fine. Her head is a little mishapened but nothing noticable with hair. The internet scared the **** out of me. Her head always went up but we thought she was just snooty.:) We actually discovered it later than you and she responded very well. Good luck.

PT can do much help and they can help you with some neck muscle techniques to help loosen her neck. But you got to keep it up at home as well. She should then move up to tummy time to strengthen her neck muscles but also develop her motor skills to help her get crawling (but she must get her neck loosened first). Another tip, keep a good watch on her head shape because flatten can occur, also called positional plagiocephaly. A good way to see is to look at your baby's head from up top and if the ears are not matching up in position or if they're misaligned. In a case like that, you may want to ask your pediatrician for an opinion. However, your taking the proper steps to intervene early and I wish your daughter much success in PT.

I have not had personal experience. But since this is a condition of the muscular skeletal system, PT and the collar should be beneficial. Sorry, such a tiny baby , but it probably started inter-uterine, and now you get to deal with it. She may be in pain and discomfort and fuss a lot so give her lots of hugs and love and good luck with this. PS, I am a nurse with over 30 years experience so I have seen this, but not in such a young child. Good luck.

Congenital muscular torticollis (CMT) refers to a shortening of the sternocleidomastoid (SCM) muscle in an infant. It is a condition that responds very well to a stretching program and spinal adjustments.
The most common causes are considered to be due to intrauterine malposition and/or birth trauma since CMT is more frequent after breech presentations.

Chiropractic along with physical therapy is a very effective course of care. It is also helpful to put her on her stomach to play so she raises her head and stretches the muscles.