If you and your family are navigating the path that leads to diagnosis and/or treatment of your child’s neurologic disorder, you may very well feel lost and alone. But, please know that the entire child neurology community is here to support you every step of the way. That’s why the Child Neurology Foundation has partnered with healthcare providers, advocates, and industry to create this child neurology Disorder Directory. It is intended to serve as a road map whereby you can connect to the appropriate partner within the child neurology community who can assist you in addressing your needs as a patient or caregiver, no matter where you find yourself on the journey.
Our aim is threefold: 1. To provide you with credible educational information about specific diseases through articles written by child neurologists for patients and caregivers; 2. To share stories from families whose children have the same diagnosis you face; 3.To provide links to disease-specific advocacy and support groups where additional support and resources are available to you.
With that said, we encourage parents of children with neurologic disorders to consider themselves equal partners in every aspect of their child’s care. You are your child’s most critical resource. Not even the best doctors have your vantage point, since you are with your child every day, observing, recording, and sensing subtle nuances of their condition.
And while the Internet is beneficial, people may ultimately be your most important resource. This can include not only experts such as your child’s neurologist and other healthcare providers, but people who simply listen without judgment or feedback. If you don’t have any of these people in your life, seek out a support group in your community or online. Social media allows families navigating the same diagnosis to connect and support one another.
So, we welcome you to explore this Disorder Directory, ask questions, and provide feedback via this link. If you are a provider or advocate, we encourage you to link these pages to your organization’s website and share them with your patients and/or constituents. We’ve done our best to research and vet the resources included on these pages. Have we missed a trustworthy resource or organization? Please do not hesitate to share it with us. We’ll have our experts review it, and we will add it in the resources section as appropriate. Finally, this information is not intended to serve as medical advice. You should always discuss your child’s care with your pediatric neurologist.
Harvey S. Singer, MD
Tic disorders, including the most widely known Tourette syndrome (TS), are neurobehavioral disorders that begin in childhood or adolescence. The primary feature of each of these entities is the presence of motor and/or vocal tics. Although these disorders are common, there remains an ongoing search for a clearer understanding of their etiology and neurobiology. The impact of tics can be quite variable, ranging from minimal to devastating, depending on their psychosocial and physical impact. Tics rarely appear in isolation. Other coexisting conditions may include attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and anxiety. Behavioral disinhibition is a more significant source of difficulties than the tics. Specific pathways within the brain have been implicated (cortico-striatal-thalamo-cortical). However, the exact location and underlying mechanism remain unclear. Education of the patient and family is an essential part of therapy. There is no cure for tics. A variety of behavioral therapies and pharmacological agents and have been used successfully to suppress tics.
Martina Bebin, M.D.
Tuberous Sclerosis Complex (TSC) was originally described in 1862. Clinicians’ understanding of this genetic disorder has evolved significantly over the last 150 years. It is a genetic disorder that can affect every organ system in the body and has significant variability in how it appears. The most common manifestation of TSC is the presence of benign tumors involving the skin, brain, kidneys, lung, and heart. These lesions may grow over time and cause clinical symptoms that deserve medical management and intervention when appropriate. Clinical symptoms associated with TSC can impact an individual’s quality of life. The lesions are most commonly associated with the brain resulting in seizures, developmental delay, intellectual disability, and autism. The disease manifestations of TSC can vary. The implementation of TSC genetic testing has made a significant impact in the accuracy of confirming the diagnosis, particularly in mildly affected individuals.