Specialists and Care Coordination
Building a team of people!
One constant for every family supporting a child with Ogden Syndrome is the many relationships you’ll develop with medical professionals and rare diseases specialists. You’ll build a team of people – some that work together, others that you cultivate and coordinate on your own. We’ve provided a list of the most common specialists our kids see and a brief explanation of how this type of practitioner should be able to support you.
Specialists for Ogden Syndrome aka NAA10
Geneticist
A geneticist who specializes in the science of genetics. They are the doctors who will diagnose Ogden Syndrome, using a complex genetic test called whole-exome sequencing.
Cardiologist / Electrophysiologist
Cardiologists specialize in treating children with heart disease. It is particularly important for individuals with Ogden Syndrome to monitor for heart arrhythmias. Some of our patients see an electrophysiologist, which is a specialist who focuses on the electric rhythms of the heart, as Long QT syndrome is not uncommon for our kids but can be difficult to diagnose.
Neurologist
Neurologists are physicians that specialize in treating patients with conditions in the brain and nervous system. This is important for individuals with Ogden Syndrome, as many of our children have neurological conditions including epilepsy.
Ophthalmologist
Ophthalmologists are medical and surgical doctors who specialize in caring for patients who have a variety of eye conditions. Many of our children with Ogden Syndrome have refractive errors, astigmatism, and cortical/cerebral visual impairment, a condition affecting the visual pathways and visual processing centers of the brain.
Orthopedist
An orthopedist is a physician who specializes in treating musculoskeletal (bone , joint, and/or muscle) conditions. Orthopedic physicians will look at the health of the spine, hips, legs, and feet in individuals with Ogden Syndrome.
Gastroenterologist
A gastrointestinal physician specializes in diagnostic testing and treatment for an individual’s digestive system. Individuals with Ogden have a wide range of gastrointestinal issues.
Endocrinologist
A pediatric endocrinologist specializes in treating hormonal conditions and conditions related to the endocrine glands. Individuals with Ogden syndrome can have growth hormone imbalances and other hormonal conditions and often enter into puberty early.
Pulmonologist
A pulmonologist is a physician who specializes in respiratory problems. A pulmonologist also specializes in sleep disorders. Many of our children with Ogden Syndrome have sleep issues, and a pulmonologist can help in diagnosis and treatment of these disorders.
Physiatrist
A physiatrist is a physician who specializes in rehabilitation and medical management of an individual with mobility challenges due to a neurological diagnosis. A physiatrist looks at the whole child with the goal of helping the child gain more functional mobility while also assisting with pain management.
Care Coordination
Complex Care Coordinator
A complex care coordinator is beneficial for individuals with medically complex needs. They can help coordinate appointments with specialists, facilitate collaboration between specialists, develop collaborative treatment plans, provide consultation with healthcare providers, and help navigate diagnostic dilemmas by collaborating with specialists.
Developmental Pediatrician
A developmental pediatrician is a pediatrician who specializes in developmental and behavioral needs of children. This can be particularly helpful for individuals with Ogden Syndrome who demonstrate delays in their development and/or behavioral challenges.
Therapy-Related Services
Beginning from a very young age, even before reaching age one, children with Ogden Syndrome can begin to greatly benefit from a variety of types of therapy. Often, and especially as children get older, they may participate in more than one type of therapy on a regular basis, as either one-on-one sessions or co-treatments. While it’s true that every child progresses at their own pace, therapists can help our kids attain and keep their skills. Therapists can also be an important resource in determining if a child needs medical equipment or assistive technology and in providing justification of these needs to your insurance company.
