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.
Bruce R. Korf, MD, PhD
Neurofibromatosis type 1 (NF1), was referred to in the past as “von Recklinghausen disease” or sometimes as “peripheral neurofibromatosis.” The term NF1 is now preferred. It is a genetic disorder that can affect many systems of the body. The hallmark features are patches of brown pigmentation on the skin (café-au-lait spots) and benign tumors that arise from the tissue that surrounds nerves (neurofibromas). Neurofibromas can cause cosmetic problems, disfigurement, and, in some cases compression of critical structures such as the airway or the spinal cord.
Margaret Semrud-Clikeman, PhD
Neuropsychological assessment is designed to provide insight into how a child solves problems, can remember information both in the short and long-term, uses and understands language, processes information both visually and orally, and is able to use cognitive ability in a flexible manner. It is designed to provide parents, educators, and medical personnel not only with what the child knows, but how the child thinks and arrives at solutions. It encompasses cognitive ability as well as emotional and behavioral regulation assessment. Children can have difficulty for many different reasons and a neuropsychological evaluation provides a window into understanding what is problematic, what is a strength, and also treatment recommendations.