Torticollis and Sandifer's Syndrome
By Lisa Shaw, PT
What is infant torticollis and how does it relate to GERD or reflux?
Because of the discomfort associated with GERD, it is common for babies to demonstrate some arching through the neck and back. This may be infrequent or frequent and may occur during the day and/or night. For some babies, the physical motions disappear when the reflux is under control through positioning, diet and/or proper medications, whatever regimen seems to be effective for each baby. However, for other babies the arching continues despite apparent "control" of the reflux.
It is thought that this arching is a sensory stimulated reflex pathway, essentially the baby "moving away" from the pain. It is entirely possible that the position the baby tries to achieve helps to decrease the regurgitation and this is an area of current study in infant reflux. Incidentally, it is known that prone (tummy position) does help close the sphincter.
Indications of torticollis and Sandifer's syndrome
Arching into extension may look like just an uncomfortable backwards shrug or may involve full body extension in an almost spastic manner, the latter of which is referred to as Sandifer's syndrome. SS is typically defined as transient dystonia (altered muscle tone) due to reflux. In my professional opinion, there is a spectrum of physical motion and while Sandifer's syndrome is considered when there is extreme extension and posturing, all of the posturing whether mild or severe is similarly associated in the presence of GERD.
Along these same lines, torticollis can occur as a complication of reflux. The arching into extension typically involves some rotation of the neck, and that repeated posturing coupled with the baby's normal asymmetry and lack of muscle control during the early months, often leads to tightening of the neck muscles resulting in a right or left torticollis. Right torticollis is more commonly associated with GERD but left can occur as well (as in the case of my daughter). The normal symptoms of torticollis include tightness of the sternocleidomastoid on one side resulting in a head that is laterally flexed to the same side as the tight muscle and rotated to the opposite side, and weak/elongated muscles on the opposite side of the tight muscle.
One of the red flags that signals torticollis is a tendency for your baby's head to be tilted to one side or rotated to one side (look back through your photos from the last month or two to assess whether this is habitual). Often the parent will notice that the back of the head is slightly flat on one side, from the continual movement of the baby into a preferred posture.
Treatments for Torticollis
Once repeated posturing is noted the baby is best served by initiating early intervention due to the high risk for torticollis. Of course, first ensure that the GERD is controlled as well as possible medically, using all conservative measures routinely - keep baby upright during and after feedings, use a wedge for sleeping, avoid lots of flexion (baby sitting with neck or head bent forward) in the bouncy seat or carseat, avoid sling carries with the baby in flexion, etc. Then proceed with an evaluation by a pediatric physical therapist in order to assess whether there is tightness in the neck muscles and whether head and trunk control are developing as they should be. When initiated early, the baby may only require a session or two of physical therapy plus a few home exercises versus weekly ongoing therapy once the neck muscle is truly contracted.
Both the tightness and the weakness of the neck muscles must be addressed through developmental exercises, and the whole body must be addressed in order to promote the development of normal flexion and symmetry.
Use a wedge that is designed to address torticollis and another common "partner" condition, plagiocephaly, and use tummy time as often as possible during the day. Tummy Time Tools from Children's Healthcare Atlanta is an excellent reference for tummy time activities that promote normal development and symmetry for any baby but beware some of the positions may squish your baby's tummy.
Finding professional help for torticollis
If you have any questions about the physical development of your baby, or whether your baby demonstrates significant arching that persists beyond the first month of life, do insist upon a proper developmental evaluation. For assistance in finding a pediatric physical therapist in your area, go to American Physical Therapy Association and click on "Find a PT" or call your local children's hospital and ask for outpatient pediatric physical therapy. You may even have a local pediatric rehab clinic near your home, and often there are private practices that send travel PTs to evaluate and treat in the home environment
Research shows that beginning therapy within a week or two of noticing asymmetry or neck posturing is crucial for optimal success as well as a greatly reduced number of visits.
Looking for products to help torticollis?
Visit our online store for torticollis wedges and baby carriers that let you change your baby's position frequently.
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