Treatment algorithm

Please note that formulations/routes and doses may differ between drug names and brands, drug formularies, or locations. Treatment recommendations are specific to patient groups: see disclaimer

ONGOING

inadequate head control or age <5 months

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1st line – 

physical therapy + home program

Physical therapy is a first-line treatment and is warranted in all infants with CMT.[10] One evidence-based clinical practice guideline on physical therapy management in CMT was published in 2018, as an update to the 2013 guideline.[9][30]

In addition to massage and myofascial release performed by therapists, further therapy and a home program should include education on positioning, carrying, and feeding to incorporate stretching and strengthening, and prone play.

A tubular orthosis for torticollis (TOT) is occasionally prescribed, but it is not universal.

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Consider – 

cranial molding orthosis

Treatment recommended for SOME patients in selected patient group

Patients with moderate to severe plagiocephaly should wear a cranial molding orthosis.[34]

As the skull grows the fastest and is most malleable in the first year of life, the optimal response is obtained if used between 4 and 12 months of age.

Categorization of plagiocephaly severity is subjective, and deciding to pursue a molding helmet is based on the opinion of the physician and parents. The helmet is worn 23 hours a day, and treatment duration is usually 3 to 4 months. Adjustments are required upon receipt then every 2 to 3 weeks.

good head control and age >5 months

Back
1st line – 

physical therapy + home program

Physical therapy is a first-line treatment and is warranted in all infants with CMT.[10] One evidence-based clinical practice guideline on physical therapy management in CMT was published in 2018, as an update to the 2013 guideline.[9][30] In addition to massage and myofascial release performed by therapists, further therapy and a home program should include education on positioning, carrying, and feeding to incorporate stretching and strengthening, and prone play.

A tubular orthosis for torticollis is occasionally prescribed, but it is not universal.

Back
Consider – 

cranial molding orthosis

Treatment recommended for SOME patients in selected patient group

Patients with moderate to severe plagiocephaly should wear a cranial molding orthosis.[34]

As the skull grows the fastest and is most malleable in the first year of life, the optimal response is obtained if used between 4 and 12 months of age.

Categorization of plagiocephaly severity is subjective, and deciding to pursue a molding helmet is based on the opinion of the physician and parents. The helmet is worn 23 hours a day, and treatment duration is usually 3 to 4 months. Adjustments are required upon receipt then every 2 to 3 weeks.

Back
2nd line – 

onabotulinumtoxinA injection

Injection into the SCM and/or upper trapezius muscle is performed in children with CMT that is refractory to physical therapy and a home program. Retrospective studies have shown it to be safe and effective.[38][39] It may also help avoid the need for surgical release and can be repeated in 3 months if deficits persist.

One meta-analysis of 10 studies found the effectiveness of botulinum toxin for CMT was 84%, the adverse reaction rate was 1%, and conversion to surgery was 9%.[40]

Doses vary depending upon the age of the child and severity of torticollis.

The injections can be done safely without anesthesia, but some physicians choose to anesthetize the children.

Primary options

onabotulinumtoxinA: consult specialist for guidance on dose

Back
Consider – 

cranial molding orthosis

Treatment recommended for SOME patients in selected patient group

Patients with moderate to severe plagiocephaly should wear a cranial molding orthosis.[34]

As the skull grows the fastest and is most malleable in the first year of life, the optimal response is obtained if used between 4 and 12 months of age.

Categorization of plagiocephaly severity is subjective, and deciding to pursue a molding helmet is based on the opinion of the physician and parents. The helmet is worn 23 hours a day, and treatment duration is usually 3 to 4 months. Adjustments are required upon receipt then every 2 to 3 weeks.

Back
3rd line – 

sternocleidomastoid muscle release

This is considered for children with persistent CMT despite physical therapy and onabotulinumtoxinA injections. A study of patients (age range 2 to 13 years) with CMT treated surgically showed excellent results in 88%.[41]

It is considered when there is no improvement after 6 months of physical therapy and there is a tight fibrotic band in the muscle, or when children are ages >1 year.[10][16]

Endoscopic release has been shown to have a favorable long-term outcome.[42]

Craniofacial deformity in children with CMT, as measured by cephalometry, has been shown to be significantly improved after surgical release of the SCM muscle, especially if the surgery was performed on children <5 years.[43]

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Choose a patient group to see our recommendations

Please note that formulations/routes and doses may differ between drug names and brands, drug formularies, or locations. Treatment recommendations are specific to patient groups. See disclaimer

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