Torticollis in 9 Week Old...

There is a clinic in Sacramento that is helping babies like no body's business. A lot of the Lactation specialists are sending their clients there first b/c they are helping their necks.
The number is ###-###-####
I know people who drive up from San Jose and have seen huge changes in their baby.
Good luck!
Constance

My friends son went to physical therapy for about 2 months, and he only would turn left. Not sure if it was torticollis.

My daughter was diagnosed with Torticollis also at about a month old. She was turning her head to the right, and was developing a slightly flattened right/back side of her head. She also started sucking her right thumb, and turning more toward her right side at around 4 months (which solved all her sleeping problems, btw, cuz she learned to self-soothe, and started sleeping 11 hours through the night once she figured that out!!). Anyway, we went through a few months of P.T. and it really helped to relax those tightened muscles and increased her range of motion. It mostly entailed lots of infant massage techniques, which I also did with her at home, especially after bath time when she was relaxed and loosened-up. It worked great, and P.T. discontinued when she was about 8-9 months old. My daughter is now 3, and she still has a slightly flat area on that right/back side, but you can only notice it when her hair is wet and you look really closely. Otherwise, it's a distant memory. :-) Good luck!

Hi A.,
There was a similar request for this 11/19/09 with many replies, so I hope you can view the previous responses, as my daughters case was moderate-severe and many others were mild. For nursing have the PT/OT check the latch as torticollis sometimes affects the jaw-tongue motion (& therapy and positioning address this).

see repeat below... Best wishes for good outcomes...
----------------------------
From: T. C Date: Wed. Nov. 25, 2009
Dear Stephanie,
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!

Your baby has a preference to one side. You need start positioning him so he looks at the opposite side. This has become an epidemic since babies were placed on their backs for sleep. He needs tummy time, as much as possible. Hold him the opposite way you usually do. The PT will give you some ideas for getting him to look the 'other way'. feed him by holding him in each arm, looking both ways. It's an easy fix with positioning and simple stretching exercies.

My daughter had a lump around where her colar bone is and it was causing her to pull her head to the right. We ended up having her in physical therapy for a couple of months. They just had us massage the lump and do very gentle stretching with her head and neck. Also when we held her and she was sleeping up against our chest we turned her head the opposite direction to give her a little passive stretch. She is 4 now and you would never know she had a problem. I cant remember what the doctor called it. I hope this helps.

Hi there,

My two-year old did not have Torticollis, but she did always turn her head to her left when sleeping, or when I was holding her. Her little bald spot (from sleeping on her back) was slightly off centered. We had her checked out and they said she was okay, and now that she is 2 I'd completely forgotten about it. But now that I think back, she ALWAYS had her head turned over her left shoulder when she was sleeping against my chest, which she did a LOT! I worried about it a lot when she was a baby, but she's just perfect at 2 years old. :)

I know, not the same situation as yours, but thought it might make you feel a bit better.

Good luck!

H.

My son had torticollis when he was a baby. He went to physical therapy for about 8 months, and he has the best posture ever! Therapy definitely helps; when you are finished you will never know that he had torticollis.

I don't know if you are also on the Baby Center community board, but another mom in the June '09 birth club was just asking about this! Her responses sounded positive, and treatment seemed to be just p.t. and they could completely correct the problem by 18 months. Good luck!

My daughter was diagnosed with Torticollis when she was 12 weeks old. She went to Physical Therapy once every two weeks for 4 months. She's totally fine now and has full range of motion in her neck and head. The physical therapist will demonstrate activities (mostly stretching) for your child. You can also do it at home. My only warning would be to make sure that you do the stretches and exercises evenly. My daughter could not look to the right side (only turn her neck to the left) and now, after her PT experience, she's a little stronger on the right side (because that's the side we worked out a lot in order for her to turn that way). So she has a little lower muscle tone on the left side. So, just be sure that you don't neglect the side that your child already can turn to, or else the PT exercises will unevenly strengthen your child's neck or head muscles.

I breastfed my daughter throughout the entire time that she had torticollis with no problems. You just have to adjust the child a little so that the angle is right. If you're having trouble latching, you might want to try a nipple shield to prevent you from getting bent or pulled in an uncomfortable way. Good luck.

I don't know about Torticollis (but will be looking it up to find out what it is).
I do have a question however. You said the Dr. said the lump is "his sutures and normal". I'm curious as to why your little guy had sutures on his back, and whether whatever caused that could still be part of the problem.

Chiropractic is very successful at treating torticollis. It is extremely safe and effective and doesn't usually take months and months of therapy. Your son may benefit from therapy in conjuction with the chiropractic

Hi A.,
I'm sure you must be worried, but if your son does have Torticollis the sooner therapy starts the better. Before I became as SAHM, I was a pediatric OT and worked with children who had Torticollis. Along with therapy most likely you will be giving a home program to follow to strengthen and stretch the weakened tight muscles. It's best to start early, before your son starts to develop movement patterns (i.e. rolling) that can be affected by the Torticollis. After therapy ends, the Torticollis will have resolved and you won't be able to notice that he once had it.

Best of luck.