Torticollis Kids

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The information contained in this website is not intended  to replace the advice of a Medical Doctor or Physical Therapist.

Viewpoints expressed on and the Torticolliskids yahoo group may not necessarily be that of the Webmaster.

Frequently Asked Questions

What causes Congenital Muscular Torticollis?

CMT is caused by damage to or a shortening of the Sterno-cleido-mastoid muscle in an infants neck.  Sometimes, but not in all cases,  there is a hematoma (lump) in the muscle where it was damaged.  That lump will eventually go away as the muscle heals and is stretched.  The most common causes of CMT are inutero positioning, lack of space inutero (big baby or little mom), a traumatic birth, multiples (lack of room again!), and low amniotic fluid inutero.  Obviously, non of these things can be prevented.  SO, now you can stop feeling guilty!


What are the symptoms?

Many parents, especially first-time parents, don't realize that their child is having a problem. Often torticollis is mistaken for the normal 'floppy' neck of a newborn. As the baby gets older it will become more apparent. Generally, you will see the 'tilt' associated with torticollis in the first week to 10 days of life.

If your child is affected by CMT (congenital muscular torticollis) there will be a tightening of the Sternocleidomastoid muscle (SCM) on one side of the neck. Because the SCM controls both tilt and rotation (ability to look from side to side), a child with torticollis will tilt one way and look towards the opposite side.

Most times, you will notice that whenever your baby sleeps, his/her head will be in the same position.

This baby is 5 weeks old and just diagnosed with CMT

The head tilt does not need to be this severe to be torticollis. Any inability to straighten the head or inability to turn his/her head both directions equally could be torticollis.


Why is torticollis becoming so common?

Because babies are sleeping on their backs now and the muscles in the neck and upper back aren't being stretched out as they were with tummy sleeping.

If you suspect your child may have torticollis or a tightening of the neck muscles, tummy time WHILE AWAKE, is vital to their recovery. Try to put your baby on their tummy whenever they are awake- at least an hour a day.


How  is torticollis treated? 

Congenital Muscular Torticollis (CMT) is primarily treated with Physical Therapy (PT). In fact, PT is VITAL to complete recovery! Some parents have supplemented their PT with chiropractic and have been pleased with the results.

The TOT collar is often used from sitting to walking and, once a child is walking, a PT may try taping the neck to resolve any persistent tilt.

A child who doesn't respond to conventional therapy MAY need surgery. In our experience, surgery is used when Range of Motion (ROM) does not improve. After surgery there is often still the problem of lateral tilt to deal with so therapy is still needed! Surgery is VERY rare and most children respond to PT.

How long will he/she need PT? 

We recommend weekly (or every other week for sure) PT until a child has mastered sitting and crawling or standing. At that point you can probably go down to every other week or monthly. You should be followed by a PT until your child is walking. Even though you may think your child is improving, you may see increased tilt once a child starts to attempt walking.

What is a TOT Collar?

A Tubular Orthosis for Torticollis (TOT) Collar is used to treat infants with CMT. Basically, it is a very simple device that is made from soft plastic tubing. This tubing fits around the neck, There are hard plastic pieces that fit in-between the soft tubing on the tort side. They are cut to fit the infants neck so that they hit the base of the skull in certain places. When they tilt their head and hit these harder pieces, it is uncomfortable and they straighten their head. The collar is used for infants who are 4 months or older, show a consistent head tilt of 5 degrees or more. They should already have adequate ROM and have head control. The infant MUST be supervised at all times while wearing the collar. They should wear it only when awake and active. The collar should not be used on a child in a car seat.

We have found through member experiences that the TOT is easiest to use and most effective right after a child begins sitting and can be used until they are walking! The TOT should be fit by a PT and often has to be re-fit after considerable growth.

The TOT Collar should not be used in a car seat, an infants ROM (range of motion) is already hindered, and the tot collar can make it worse. Also, if in car, you can't see them. Most infants fall asleep in the car, and the collar should only be worn when the infant is awake, active and in your eyesight.

The parents and PT's that have used the TOT rave about it's success. This device is a great addition to the treatment process for infants with torticollis!


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