Larsen Syndrome

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The pediatric orthopedic specialists with Norton Children’s Orthopedics of Louisville (COOL), affiliated with the UofL School of Medicine, are the foremost providers of pediatric orthopedic care in Louisville, Kentucky, and Southern Indiana. Our fellowship-trained pediatric orthopedic specialists provide specialized care for children and teens with Larsen syndrome.

What Is Larsen Syndrome?

Larsen syndrome is a very rare disorder that affects bone growth. The condition affects one in 100,000 babies every year and can affect each child differently.

Larsen Syndrome Causes

Larsen syndrome is a genetic disorder caused by a mutation in the gene called FLNB (filamin B). This gene is important to skeletal development before a baby is born. A child can inherent an abnormal FLNB gene from either parent who has the gene, whether the parent has the condition or not. To have the condition, a child must have two abnormal FLNB genes, one from each parent.

Larsen Syndrome Symptoms

Children with Larsen syndrome may have symptoms that affect the facial structures, bones and joints. Some symptoms may include:

  • Abnormally loose joints
  • Craniofacial issues such as cleft palate, wide-set eyes, prominent forehead, flattened bridge of nose
  • Dislocated elbows, knees and hips
  • Extra bones in the ankles and wrists
  • Foot issues such as clubfoot
  • Hearing issues due to malformation of bones in the ear
  • Respiratory issues
  • Short stature
  • Spinal conditions such as scoliosis, kyphosis or cervical spine conditions
  • Square-shaped finger tips

Larsen Syndrome Treatment

Treatment plans for Larsen syndrome will be unique based on a child’s diagnosis and current condition. Some of the symptoms of Larsen syndrome may be apparent at birth and can be treated then –– such as craniofacial conditions and clubfoot. Other symptoms, such as spine issues, may not appear or need treatment until a child grows older.

Children with Larsen syndrome may have symptoms that affect many parts of the bodyand may need treatment from a variety of pediatric specialists. The pediatric orthopedic specialists with COOL work with specialists from across the Norton Children’s network to provide care through a multidisciplinary approach that treats the whole child.

Some orthopedic treatments for Larsen syndrome may include:

  • Bracing
  • Implantation of growing rods
  • Physical therapy
  • Spinal fusion

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