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.
Suresh Kotagal, MB, BS
Complaints about insufﬁcient or unrefreshing sleep are common in children. In one survey 28% of them experienced snoring, insomnia, or episodes of unusual behaviors during sleep. Childhood sleep disorders can have a signiﬁcant effect on quality of life. Also, many disorders are treatable. This fact underscores the importance of proper recognition and therapy.
Wendy Mitchell, MD
Children and adolescents with epilepsy have behavioral and learning problems more often than their peers. Adults who had epilepsy as children may continue to have social and occupational problems, even if seizures are controlled or are gone. Children and adolescents with epilepsy and adults who had childhood-onset epilepsy may have increased incidence:
poor educational attainment
lower-than-expected occupational status
higher rates of social isolation
These difficulties have multiple causes, and may not be a direct consequence of the epilepsy or its treatment. Neither epilepsy nor the seizures themselves are generally the most important cause of cognitive or behavioral problems. The underlying causes of cognitive and behavioral dysfunction may be subtle or obvious. The cause of the seizures may also be the cause of the other difficulties.
Adam Kirton, MD, MSc, FRCPC
Stroke is brain damage that occurs secondary to the blockage or breakage of blood vessels in the brain. The causes of stroke in children are many and often not well understood. Diagnosis requires careful clinical examination combined with brain imaging. Early treatment focuses on protecting the brain and keeping blood vessels open to prevent more strokes. Most children experience neurologic deficits with long-term treatments focused on physical, developmental, and psychosocial complications. The study of pediatric stroke has been growing rapidly, from understanding the main causes to supporting children and families.