Skeletal Health Program

Complete, Team-Based Skeletal Healthcare That Evolves to Meet Your Child’s Changing Needs

Seattle Children’s Skeletal Health Program provides comprehensive care for babies, children, teens and some adults who have or .

Our team of experts diagnoses and treats skeletal conditions, caring for patients over many years as they grow and their needs change. Often, people with dwarfism come to Seattle Children’s for care into adulthood. They choose to see us because of our deep expertise and caring approach to their lifelong health and wellness. Our program draws many families from around the western United States.

Conditions We Treat

We hold clinic 1 to 2 times each week to see children who have a concern about skeletal health, need treatment or want a second opinion. Conditions we treat include:

Dwarfism and other types of
, like , , and other diseases that cause fragile bones

Why choose Seattle Children's Skeletal Health Program for care?

Careful, accurate diagnosis

Our specialists have a great deal of experience looking at a child’s symptoms, imaging studies, exam findings, test results and family health history to tell if they have a skeletal condition and what the cause is. For example, a child who is shorter than others their age may be perfectly healthy. Or they may have a gene that causes a growth difference. They may lack the that help control growth or have a digestive problem.
Careful diagnosis helps us make sure your child gets the right treatment — and avoids treatment they do not need. It’s also important for understanding all the ways your child’s condition may affect them.
If a prenatal (before birth) suggests that your developing baby may have a skeletal dysplasia or related condition, we work with Seattle Children’s Fetal Care and Treatment Center. Together, our experts provide diagnostic and counseling services to you and your family.

Attention to all aspects of health over time

We specialize in caring for kids. This means our experts have the knowledge, training and skills to treat the youngest patients, from babies through young adults. Children with skeletal concerns may need different treatments than adults do.
Complex conditions can affect more than a child’s bones, muscles and joints. That’s why we connect you and your family with any expert your child may need. The Skeletal Health team works closely with other specialists at Seattle Children’s to care for people with a range of conditions, like Down syndrome, Marfan syndrome and .
From birth to adulthood, we follow your child’s development and meet their changing needs. In their early years, the focus may be on speech, toileting and starting school. By their teen years, the focus may turn to physical concerns such as the angles of their bones.
At each stage of life, we partner with you, your child and other healthcare providers to take care of what matters for your child. This includes their physical, social and psychological needs.

Support for your whole family

We know it can be stressful to have a child with a skeletal condition and to find the treatment they need. Everyone at Seattle Children’s works to make your experience here as easy as we can on your whole family.
Your child’s team does more than plan and provide care for your child. We also make sure you and your child understand your child’s condition and treatment options.
Seattle Children’s supports your family with a range of resources. Our Child Life specialists, Family Resource Center and Guest Services are here to help.
For more support beyond our walls, the Skeletal Health Program has close relationships with:
- Little People of America, Inc., the advocacy and support group for families with dwarfism
- Osteogenesis Imperfecta Foundation
- Camp Korey, which offers camps for children with skeletal dysplasia and metabolic bone diseases

Research to improve your child's life

We are dedicated to improving care for all children by studying how our patients do over time. We also research treatments for skeletal conditions so children can be healthier and more active.
Our experts also partner with international researchers, so we know we are using the most advanced methods and technologies. This approach helps us make sure your child gets the best and safest treatments and the best possible results.
Seattle Children’s doctors helped to found the Skeletal Dysplasia Management Consortium. This international panel of experts developed guidelines on how to diagnose and treat skeletal dysplasias.
Our doctors were part of an international panel of experts that developed evidence-based guidelines to diagnose and treat in babies with achondroplasia, the most common type of dwarfism.
Our team did research on the medicine pamidronate (which slows bone breakdown) for children with severe osteogenesis imperfecta. It showed they were better able to take part in sports and other physical activities after using this medicine for a year.
We are involved in studies to check the results of 2 medicines that may help children with genetic conditions that affect bone health. One is vosoritide to increase height in children with achondroplasia. Another is burosumab-twza to strengthen bones in children with X-linked hypophosphatemia (low levels of phosphorus in the blood).
Learn more about current orthopedics research at Seattle Children’s.

Treatments and Services

We offer the most advanced treatments and tailor care to your child. Based on your child’s condition, we may:

Strengthen their bones with medicines.
Use hormones to promote growth.
Help your child with .
Help them adapt to school.
Get equipment that helps them be active.
Offer surgery. For children who need surgery on their spine or limbs, our , and provide the highest level of care.

As your child grows, we carefully check their health so we can adapt their care as needed. For example, your child may have DEXA bone density scans (PDF) (Russian) (Spanish) to check their risk of fracture. For imaging that uses radiation, we use the lowest amount possible (PDF) to make the best image.

Skeletal Health Progam Team

To give your child the best possible care and make the process easy for you, our experts work together as a team. Your child’s Skeletal Health team includes , , , , and . Our team also includes a registered nurse who focuses on skeletal dysplasia and a family service coordinator who helps schedule and coordinate your child’s appointments.

If your child needs care from specialists across Seattle Children's, like the Spine Program, Neurosciences or Otolaryngology, we involve them. We also help schedule appointments to streamline care for you.

Some children need to get medicines for their bones through an line. When this is the case, your child’s Skeletal Health team works closely with Seattle Children’s Infusion Center to coordinate care.