Hi Amy,
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...
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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!