Neurodevelopmental Keiki Care
Dr. Ryan Lee
Pediatric neurologist at Shriners
Where did you receive your schooling/training?
I went to Punahou School and then to Creighton University in Omaha to get my undergraduate degree in biology and English. After that, I went to John A. Burns School of Medicine here in Hawaii, and did my pediatric residency at Kapiolani Medical Center, and went on to get advanced training in pediatric neurology and neurodevelopmental disabilities in Baltimore at Johns Hopkins University School of Medicine and the Kennedy Krieger Institute.
How long have you been in practice?
For a year in Baltimore, and I just started here at Shriners.
What conditions do you treat at Shriners’ Neurodevelopmental Clinic?
Patients come here who are referred for a specific problem having to do with neurodevelopment.
I work with our multi-disciplinary team to diagnose and treat an array of disorders involving the developing central nervous system. That’s the brain, spinal cord and peripheral nervous system in children and adolescents. We primarily see children with developmental disorders meaning autism, intellectual disability, Rett syndrome, ADHD (attention deficit hyperactivity disorder), motor disorders such as cerebral palsy, epilepsy and any other disorders affecting the nervous system. For 90 years Shriners has provided orthopaedic services. Shriners provides surgery and inpatient care. We also just opened our Fracture Clinic for children who have a broken bone or sports injury. They can walk in and receive immediate specialized care from an orthopaedic doctor with no appointment. That includes casting, X-rays and post-fracture rehab.
What is Rett syndrome?
It is a neurogenetic disorder usually found in girls. These children have been described as having autism as a feature and they frequently have intellectual disability, epilepsy and a variety of other manifestations.
Can these conditions be cured or are they lifetime disorders?
First thing we do when we evaluate a child is to characterize their concerns with a neurodevelopmental diagnosis. This usually involves a multidisciplinary approach. The next step is possibly determining what caused the impairment. For instance, Rett syndrome is genetic, so that gives a family some understanding of what caused this particular disability in the child. Then we can move toward determining the best treatment and management plan for the child. In some cases, treatment is available in the forms of medicine or surgical intervention. We’re making great gains in the field of treatment for behavioral and cognitive impairments.
There are medications coming down the pipeline as clinical trials for autism and neurogenetic disorders right now. I researched a specific disorder called Smith-Lemli-Opitz syndrome, which is a disorder of cholesterol metabolism. These children are missing an enzyme to make cholesterol, therefore the level of cholesterol in their blood is too low. We need cholesterol for brain development and many other functions in our bodies. We’ve done research on advanced types of brain imaging and genetics with the NIH (National Institutes of Health) in children looking for a cure for this disorder.
Are ADHD and autism worse when a child is younger or do the symptoms worsen with age?
There are broad spectrums of severity and co-morbid manifestations in all neurodevelopmental disorders. We define what we can do for them based on the support surrounding them and the treatment options we have available. Some children will have very severe impairment and require more intensive treatment than others with milder forms. Their level of need dictates how we’re going to approach management.
Most children don’t just have one disorder. Multiple diagnoses are the norm. A child with autism also may have ADHD and also may have seizures. About one third of children with autism have had a seizure. It’s very important that we identify these co-morbid disorders in autism, especially since the prevalence of autism is increasing rapidly today, with at least one in 88 children having a diagnosis of autism.
Do we know why?
We don’t know why exactly, but we think it’s because of how we define autism and perhaps due to genetic and environmental factors. There are many studies investigating the numerous genetic and environmental causes of autism and other neurologic disorders. Now there are evidence-based treatments for neurodevelopmental disorders, and we have to make these more accessible to patients. As a society, we need to begin to move toward accessibility of advanced treatment for all of our patients, including those with financial need. Part of the mission of this clinic is to make these treatments available.
Anything else you’d like to add?
The patients and staff make work enjoyable. I had a patient in Baltimore with diplegic cerebral palsy, and I asked, “What do you tell your friends when they ask you what’s wrong with you?” He told me, “I tell them that I’m not very different than you, I just can’t use my legs as well. And I say that if they want to be friends with me, I’ll be happy to be friends. If they don’t want to be friends with me because of my legs, I’ll be OK because I’m a good guy.” He said this with speech impairment, leaning on his walker and wearing his leg braces. The courage patients and families show inspires me. They fight battles on a daily basis. They are some of the most unrecognized heroes in our communities. We try to partner with families to help their children achieve their potential and contribute to society as much as they can. That’s our mission.