Torticollis treatment for my baby – a mother’s story

Torticollis treatment for my baby

The story below comes from Shannon Reich, who has a great blog called My Torticollis Baby, where she has documented her daughter’s diagnosis and treatment of torticollis, and shares many helpful resources on torticollis for parents.  Her story reminds me of my own, as my son had heart surgery right after he was born, and his torticollis and plagiocephaly seemed so minor at the time compared to everything else we were going through.

From Shannon:

Unfortunately, my daughter’s torticollis was not discovered until she was about seven months old.  Now looking back, she was displaying signs of it early on, but her head tilt seemed to be the least of my concerns, given other issues going on.  My daughter was born with an esophagus birth defect, underwent surgery on her third day of life, and spent almost two weeks recovering in the NICU.  After arriving home, she developed colic which lasted until she was six months old.  Considering everything I was going through, her head tilt seemed insignificant at the time.

Around four months old, I noticed that her head and trunk were tilted on a regular basis.  I didn’t want to freak myself out by going on the internet, so I decided my best bet was to consult the pediatrician.  At her six month well visit, the pediatrician suggested doing some neck stretches.  In addition, she suggested positioning her in the crib so that she would be encouraged to look in her non-preferred direction.  The pediatrician did not seem concerned, so I felt less stressed about it.  I incorrectly assumed my daughter would simply outgrow this head and trunk tilt with minimal effort on my part.

About a month passed and I noticed that her head and trunk tilt appeared worse.  Soon after, I casually mentioned her head tilt to my son’s developmental therapist.  After looking at her, she suspected that my daughter had torticollis and recommended that I get it evaluated.  Sure enough, my daughter was officially diagnosed with mild torticollis (and mild plagiocephaly) at her pediatrician’s office.  Unfortunately, receiving these diagnoses at seven months of age was considered a later diagnosis in the “torticollis and plagiocephaly world”.  It seemed that many babies had their condition diagnosed within the first few months of life.

The next month few months seemed like a blur of an insane amount of doctor’s appointments.  My daughter visited the following specialists: pediatrician, outpatient physical therapist, cranial remolding specialist, ophthalmologist, cranial facial specialist, and our state’s early intervention program.  It was a scary, overwhelming, and stressful time of constantly taking my daughter to doctor’s appointments and squeezing in her torticollis exercises whenever we had a free moment.

For several months, my daughter received twice weekly outpatient physical therapy.  She also qualified for in-home physical therapy services three times per month from our state’s early intervention program.  Fortunately, her plagiocephaly was mild enough not to warrant a helmet.  In addition, I spent a significant portion of my daughter’s waking hours doing her in-home physical therapy exercises.  I also purchased various products to help with her torticollis (Snuggin Go, Torticollis Support Kit, and the TOT collar).  In addition, I had kinesio tape applied to my daughter’s neck on two occasions and had her adjusted by a chiropractor three times.   In general, she’s made great progress over the past three months of torticollis treatment.  However, illness and teething caused some temporary tilt regressions for my daughter.

At my daughter’s last outpatient physical therapy evaluation, her physical therapist said she was pleased with our daughter’s progress.  She suggested that we stop her current once-a-week appointments, and just schedule another evaluation in one month’s time.  She instructed us to continue with our in-home physical therapy routine.  After three months of hard work (with many ups and downs along the way), it felt amazing to know that everything was actually paying off.  Her head and trunk tilt significantly decreased and her motor skills have nicely progressed. You wouldn’t even know she has torticollis unless you were specifically looking for it.  God has really blessed our family throughout this treatment process.  He provided our family with outstanding medical professionals, excellent health insurance, and supportive family and friends.  Even though my daughter’s torticollis is not yet entirely eliminated, it’s significantly better than it used to be.  I feel hopeful and confident that she will continue to make excellent progress.

This picture was taken early on in her torticollis physical therapy treatment process.  She had been in physical therapy for about 1.5 weeks.  I believe she was about seven months in that picture.

This picture is a current one at 10 months, after approximately three months of physical therapy.  Her head normally doesn’t look as straight as it does in this picture, but I was happy to have one of those great mid line pictures.  However, even when she does tilt now, its a lot less of a tilt than it used to be.

For more information on torticollis and therapies used to treat it, please see Shannon’s blog.  She has posted a lot of great information including videos demonstrating the torticollis stretches she did with her daughter.

My Torticollis Baby – A blog detailing my family’s journey treating my baby’s torticollis.  Hoping to provide resources to parents of children with torticollis.