Skeletal Dysplasia Program
The Skeletal Dysplasia Program at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, focuses on the diagnosis and management of skeletal dysplasia in children and young adults up to 21 years of age.
Skeletal dysplasia can often involve multiple systems, including but not limited to the neurologic, respiratory, orthopaedic and cardiac systems. It is our goal to treat all issues brought on by skeletal dysplasia. Our coordinated care brings together a team of doctors and staff across our hospital, allowing our patients to see several specialists in two days of appointments for more individualized, comprehensive care.
How We Treat Skeletal Dysplasia
Skeletal dysplasia is a term for more than 400 conditions that affect bone development, neurological function and cartilage growth. These disorders affect how a baby’s skeletal system develops inside the womb.
Some forms of skeletal dysplasia can be diagnosed through a prenatal ultrasound. Other conditions, however, may not be noticeable until early childhood.
We first help patients and their families understand the diagnosis and then offer the best plan of care for their child. Our treatment approach focuses on providing patients and their families with the best health care and educational resources that will keep patients as healthy and as active as possible.
Our team treats most skeletal dysplasias and cares for patients at any stage in their diagnosis. Our treatment approach includes:
- A key collaboration: We collaborate with the Greenberg Center for Skeletal Dysplasia at Johns Hopkins Medicine in Baltimore, the oldest clinic for patients with skeletal dysplasias.
- A coordinated approach to care: Our patients will see providers specific to their needs and will meet with each provider in his or her office on the Johns Hopkins All Children’s campus. The appointment schedule to see all providers will span two days. Our families coming from a distance are welcome to ask about rooms in our Ronald McDonald Houses on campus.
- Monitoring patients as they grow: We carefully monitor each patient as he or she grows to treat issues that may arise.
- Nonsurgical treatment options: There are a variety of nonsurgical treatment options that depend on the type of skeletal dysplasia the child has. Some options include bracing, growth hormone therapy, medications and physical therapy.
- Surgical treatment options: If a patient needs surgery, we work with our specialists to carefully plan procedures at the best time during a child’s growth period. Surgical treatment options may be needed to improve a child’s comfort and quality of life and may include:
- Orthopaedic surgery for limb and spine corrections.
- Neurosurgery for brain or spine conditions like cervical medullary compression, cervical spine instability or hydrocephalus.
- Ear, nose and throat surgery to help with issues related to sleep apnea, and hearing, like ear tubes and tonsillectomy.
About Our Coordinated Care Team
Our multidisciplinary care teams include experts from the following Johns Hopkins All Children’s Hospital specialties:
- Genetics: Genetics will see patients and their families for education of the type of dysplasia, genetic testing and counseling.
- Neurosurgery: Neurosurgery will evaluate and treat conditions such as foramen magnum compression, spinal stenosis, plagiocephaly and hydrocephalus.
- Psychology: We offer psychology and neuropsychology evaluations to help patients and families with emotional, learning and school-related needs.
- Pulmonology/Sleep Medicine: Our Pulmonology and Sleep Medicine specialists evaluate and treat patients for sleep apnea and if needed, work closely with neurosurgery and ENT for treatment plans.
- Rehabilitative Medicine: Rehabilitation medicine evaluates and treats patients for physical, occupational and speech issues and helps patients with independence.
- Referrals as needed: If needed, our team will make referrals to physical therapy, speech therapy and occupational therapy.
The following private practices here at Johns Hopkins All Children’s Hospital are committed to the Skeletal Dysplasia Program:
- ENT: Ear, Nose & Throat Specialists — evaluate and treat issues related to sleep apnea, hearing and breathing.
- Orthopaedics: Children’s Orthopaedic and Scoliosis Surgery Associates — evaluate and treat conditions like scoliosis, kyphosis, clubfeet, bowed leg, leg length and joint problems.
Appointments will be scheduled with specialists over two days. All of our providers are located on our main campus within one or two blocks of each other. Accommodations can be made at the Ronald McDonald House for those families who require an overnight stay.
Resources for Familes
- Little People of America (LPA) - resources available under the "resources" tab
- Local Florida Little People of America Chapter, District 4
- Little People of America Parent Discussion Group
- Dwarf Athletic Association of America
- Accommodations recommendations for students
The links provided are for informational purposes and solely for the user's convenience.