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Learning how to manage life with epilepsy can be challenging for patients and their families. That's why we've compiled this list of resources to help you and your family find additional information and support along the way.
We hope these resources, along with our care and support, help you gain a stronger understanding of your child's condition, build a community and make life with epilepsy more manageable.
The Epilepsy Foundation of Colorado (EFCO) is committed to leading the fight to overcome the challenges of living with epilepsy. Their website highlights local support groups, which are a great resource for helping you build a community with other families who are impacted by epilepsy. They also provide information that can help your child and family better understand epilepsy.
EFCO offers an entire section with information on everything from treatment options to seizure first-aid tips. They also provide opportunities to train your community and school personnel. EFCO hosts several events for people living with epilepsy and their families. Visit their website to learn more about these initiatives.
Seizure Tracker is designed to help you log and track seizure activity, appointments and medication schedules through an easy-to-use computer or mobile application. This online seizure diary empowers people living with epilepsy to become active leaders in their own treatment.
The app gathers the information you provide into a customized report that includes graphs comparing seizure activity and medication dosages. This tool can help patients and their families, as well as their medical providers, understand the relationships between seizure activity and medications.
The American Epilepsy Society (AES) is an extensive resource that is tailored to promote interdisciplinary communications, scientific investigation and an exchange of clinical information about epilepsy. The Society website offers resources about current evidence-based guidelines and parameters around quality care for patients and families.
AES is also committed to research. The society holds an AES Annual Meeting in Washington D.C. that brings together professionals from all over to discuss everything epilepsy. AES also provides resources for patients on epilepsy benefits, International Epilepsy Day and advice on how to maintain an epilepsy diary.
FACES funds research to improve epilepsy care, advances new therapies, and fosters a supportive community for children, families and caregivers. It is affiliated with the NYU Langone Medical Center and its Comprehensive Epilepsy Center.
The FACES website also offers a resource called The Parent Network. This network connects parents who have children with epilepsy with "support parents." These support parents have experienced similar issues surrounding care for a child with epilepsy. The organization also offers the first online support group for teens with epilepsy, which provides an opportunity for teens to share their experiences with other young adults to help them manage their seizures in their daily lives.
4 Paws for Ability is a non-profit organization whose mission is to place quality service dogs with children with disabilities and veterans. 4 Paws offer trainings for Seizure Assistance Dogs and many other specially-trained dogs.
Each trained dog can provide a level of emotional support and the ability to alert parents to seizures when they occur. 4 Paws will accept any child with a disability and does its best to work with families to meet their financial need. You can learn more about what it’s like to have a Seizure Assistance Dog on their website.
Angel Flight West is a network of more than 1,400 volunteer pilots who offer flights to and from medical treatment, at no cost. Angel Flight West has arranged free, non-emergency air transportation for children and adults with serious medical conditions or other compelling needs since 1983. This organization serves the 13 western states and tries to fulfill the transportation needs of families who may not be able to afford the costs of commercial airline tickets.
You can request an angel flight through a doctor's office, nurse, or social worker. Flights can be arranged in a week's notice. Visit their website for a more detailed explanation of the process.
The ParentSmart Healthline provides access to pediatric care and peace of mind 24 hours a day, seven days a week. When you call Children's Hospital Colorado ParentSmart Healthline (720-777-0123), you can receive free health care advice from registered nurses.
The nursing staff provides information and healthcare advice about more than 290 pediatric topics. They can help provide direction for parents caring for an ill child in their home. The ParentSmart Healthline nurses receive more than 30,000 calls a year, and the service available to all families in the Rocky Mountain Region.
The Centers for Disease Control (CDC) is a comprehensive resource for children, teens and people living with epilepsy. It is also a great resource for parents and caregivers who help people with epilepsy.
From daily basics like first aid to how to handle epilepsy during a natural disaster, the CDC has a lot to offer. You can also find information on the latest research, progress in the field of pharmaceuticals, and more.