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