Support for Achondroplasia in Children

The doctors at Hassenfeld Children’s Hospital at NYU Langone address all aspects of care for children with achondroplasia. This includes a number of services to help children and their families cope with many of the practical aspects of life with achondroplasia. These child and family support services and resilience programs are provided through Sala Institute for Child and Family Centered Care.

As children grow older, NYU Langone’s adult specialists offer ongoing care and support.

Care Coordination

If your child has surgery, one of our pediatric hospitalists—pediatricians who focus on the overall care of children in the hospital—coordinate care before and after the procedure.

Our hospitalists can also make referrals to other specialists to make sure your child is getting the help that he or she needs. For instance, otolaryngologists—ear, nose, and throat specialists—may be called upon to assess your child’s hearing and speech. And, our sleep medicine experts offer treatment for sleep apnea, a condition that interrupts breathing during sleep.

Rehabilitation Therapy

Children with achondroplasia often benefit from comprehensive rehabilitation services, including physical and occupational therapy, to cope with physical challenges—for example, trying to grasp something that’s out of reach.

Physical and occupational therapists also help people with achondroplasia to recover from bone or spinal surgery. Pediatric physiatrists—doctors who specialize in rehabilitation medicine—at NYU Langone’s Rusk Rehabilitation perform a comprehensive evaluation and create a rehabilitation plan involving physical and occupational therapy at various stages of your child’s care and development. Physiatrists can also prescribe pain medication to help with postsurgical pain. These services can be provided while your child is in the hospital for other treatments or at our outpatient facility.

Physical therapists can help infants with achondroplasia meet developmental milestones, such as sitting up and standing. They also offer exercises to help children with achondroplasia move more efficiently and recover from surgical procedures.

Physical therapy is also commonly used to provide nonsurgical treatment of spinal curvature, such as kyphosis. Our therapists may offer advice to reduce the risk of developing kyphosis, such as preventing infants from sitting up too early while the head is still large in proportion to the back. The therapist may also recommend using a brace to prevent kyphosis from worsening.

Occupational therapists may offer your child assistive devices that help to keep objects within reach and assist with complications, such as hearing loss.

Our physiatrists also provide guidance and support to help your child become actively engaged in sports and other recreational activities at home and school.

Nutrition and Exercise

Nutritionists at Hassenfeld Children’s Hospital offer advice about healthy eating in young children with achondroplasia, suggesting diets that can help to prevent obesity and complications, such as sleep apnea. Our nutritionists also encourage children to engage in regular exercise, which can improve muscle strength and may help to prevent degenerative bone and joint diseases later in life.

Counseling

Being small can be difficult for a child, particularly if it limits the child’s ability to participate in certain activities. Our psychologists can help children and families to work through the challenges of living with achondroplasia.