Patient and Family Education

Contact our Brain Tumor Program to learn how we diagnose and treat brain and spinal cord tumors.

About Brain Tumors: A Primer for Patients and Caregivers (American Brain Tumor Association)

Childhood Brain and Spinal Cord Tumors: A Guide for Families, Friends and Caregivers by Tania Shimiinski-Maher, Patsy Cullen and Maria Sansalone

American Brain Tumor Association 
Support and information for people with brain tumors and for their families and healthcare professionals.

National Brain Tumor Society 
Message boards, survivors’ stories, a newsletter and information on support groups and announcements about national and regional conferences.

Pediatric Brain Tumor Consortium 
The National Cancer Institute (NCI) formed this group to improve the treatment of primary brain tumors in children. It includes 10 academic centers and children’s hospitals in the United States.

Children’s Oncology Group (COG) 
One of the largest childhood cancer research organizations in the world. Seattle Children’s is a founding member.

National Cancer Institute, U.S. National Institutes of Health 
Information on cancer, screening, treatment, coping with cancer, research trials and related news.

Pacific Pediatric Neuro-Oncology Consortium (PNOC) 
A network of 15 children’s hospitals that study new therapies that are specific to the biology of each child’s brain tumor. Seattle Children’s is a member.

Contact our Neurosciences Center to learn how we diagnose and treat brain injuries.

The Pediatric Brain Injury Support Group is sponsored by Seattle Children’s in partnership with HeadStrong and the Brain Injury Alliance of Washington. Contact Sharon Ashman at 206-987-2144 or by email.

Children With Traumatic Brain Injury: A Parents’ Guide , edited by Lisa Schoenbrodt

Brain Injury Alliance of Washington 
Provides support, education and advocacy to survivors of brain injury and their families.

Brain Injury Association 
Provides support through injury prevention, research, education and advocacy efforts.

• Contact our Neurosciences Center to have your child evaluated for cerebral palsy and spasticity.
• Contact our Rehabilitation Medicine Program to learn how we treat children and adolescents with cerebral palsy and spasticity.
• See Cerebral Palsy Patient and Family Resources from Seattle Children’s. 

Contact our Neurosciences Center to learn how we diagnose and treat Chiari malformations.

Chiari Decompression: Care After Surgery (PDF) (Spanish)

Bobby Jones CSF (Chiari & Syringomyelia Foundation)
Advocacy news, research advances and information for people with cerebrospinal fluid disorders. This group works to find a cure for these conditions.

Symptomatic Chiari Malformation in Spina Bifida Patients 

American Syringomyelia & Chiari Alliance Project (ASAP) 

Contact our Seattle Sports Concussion Program to learn how we diagnose and treat concussions at Seattle Children’s.

• About Concussion

Concussion (Video: 0:30)

Tips to Prevent Concussions (Video: 2:56)

Concussion in Teens (Video. 2:19)

Advice for Teens Recovering From a Concussion (Video. 3:16)

Contact Seattle Children’s Epilepsy Program to learn more about how we diagnose and treat seizures and epilepsy. 

• Seizures and/or Epilepsy: Answers to Common Questions (PDF) (Amharic) (Arabic) (Russian) (Simplified Chinese) (Somali) (Spanish) (Vietnamese)
• Epilepsy Surgery: Making a Decision About Treatment (PDF) (Somali) (Spanish) (Vietnamese)
• Tests to See if Epilepsy Surgery is Right for Your Child (PDF) (Spanish)
• Deep Brain Stimulation (DBS): A Treatment For Drug-Resistant Epilepsy (PDF) (Somali) (Spanish) (Vietnamese)
• Responsive Neurostimulation System (RNS): A Treatment For Drug-Resistant Epilepsy (PDF) (Somali) (Spanish) (Vietnamese)
• Seizure First Aid (PDF) (Amharic) (Arabic) (Russian) (Simplified Chinese) (Somali) (Spanish) (Vietnamese)
• Seizures From a Fever (PDF) (Russian) (Spanish)
• Water Safety for Children With Epilepsy or Seizures
• Water Safety for Children With Epilepsy or Seizures (PDF) (Amharic)  (Arabic) (Russian) (Simplified Chinese) (Somali) (Spanish) (Vietnamese)
• Ketogenic Diet and Your Child (PDF)
• Ketogenic Diets and Your Student (PDF)
• Your Child’s Hospital Stay to Start the Ketogenic Diet (PDF) (Arabic) (Spanish)
• Laser Ablation Surgery for Epilepsy 
• Patient Introduction to VNS Therapy
• Laser Ablation Surgery for Epilepsy 
• Vagus Nerve Simulator (VNS) A Treatment for Drug-Resistant Epilepsy (PDF) (Pashto) (Somali) (Spanish) (Vietnamese)
• Vigabatrin Powder Packets (PDF) (Spanish)
• The VNS Therapy Magnet (Spanish) 

An Inside Look at Laser Ablation Surgery (Video. 1:59)

Medicine to stop seizures 

• How to Give Diastat (PDF) (Amharic) (Arabic) (Russian) (Simplified Chinese) (Somali) (Spanish) (Vietnamese)
• How to Give Medicine Into Your Child’s Nose to Stop a Seizure (Nasal Midazolam) (PDF) (Amharic) (Russian) (Somali) (Spanish) (Vietnamese)
• How to Give Medicine Into Your Child’s Mouth to Stop a Seizure (Buccal Midazolam) (PDF) (Spanish)

How to Give Diastat: A Rectal Medication to Stop Seizures (video: 5:23)

Cómo administrar Diastat Medicamento rectal para detener las crisis epilépticas (video 6:52)

How to Give Your Child Nasal Midazolam (video: 3:23)

Watch how to give medicine (midazolam) into your child’s nose (nasal) to stop a seizure.

Cómo administrar Midazolam nasal a su hijo (video 4:00)

Cómo administrar la medicina (midazolam) en la nariz de su niño para detener un ataque epiléptico

How to Give Your Child Buccal Midazolam (video: 3:01)

Watch how to give medicine (midazolam) between your child’s cheek and gum (buccal) to stop a seizure.

Cómo administrar Midazolam bucal a su hijo (video 3:31)

Cómo administrar la medicina (midazolam) en el cachete y la encía (vía bucal) de su niño para detener un ataque epiléptico

Planning for epilepsy surgery 

• Tests Before Epilepsy Surgery (PDF)

Support

• Connect: Be A Part Of A Vibrant Engaging Community Epilepsy Foundation
• Parent to Parent (P2P) Support Programs of Washington State (Spanish)
• The Arc Support & Networking Groups Epilepsy Foundation Washington

External links

Epilepsy Foundation Washington

National Association of Epilepsy Centers (NAEC) 
A professional group that accredits specialized epilepsy centers. Seattle Children’s is accredited as a level 4 center, the highest level.

Epilepsy Foundation of America 
A national, voluntary agency dedicated to providing support to people with seizures through research, education, advocacy for innovative care and services.

University of Washington Regional Epilepsy Center 
As part of this center, Seattle Children’s can offer our patients access to more research studies and technologies to diagnose and treat epilepsy.

• About headaches
• Headache Help for Your Child or Teen (includes information on triggers, prevention and ways to treat headache with and without medicine) (Russian) (Spanish)
• Headache Log for headache appointments
• Help for My Headache: What Steps Can I Take to Reduce My Headaches?  (Spanish)
• Botox Treatment for Chronic Migraine Headaches
• Biofeedback Clinic: Frequently Asked Questions (Arabic) (Simplified Chinese) (Somali) (Spanish) (Vietnamese)
• Headache Relief Guide Children’s Mercy Kansas City
• How to Use the Cefaly Device to Manage Headaches (PDF) (Spanish)
• Migraine Buddy app
• Miles for Migraine
• Pediatric Migraine: A Guide for Parents American Migraine Foundation

Get Support Hydrocephalus Association

The Hydrocephalus Association 
A national organization that provides support, education and advocacy for individuals, families and professionals. Some information is available in Spanish.

Hydrocephalus Clinical Research Network 
A group of leading children’s hospitals, including Seattle Children’s. Their research with patients aims to dramatically improve the lives of kids with hydrocephalus.

Contact our Neurosciences Center to learn more about moyamoya, the narrowing of the blood vessels to the brain, which increases risk of stroke.

National Institute for Neurological Disorders and Stroke 
A federal agency that seeks to learn more about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

International Alliance for Pediatric Stroke 
Provides information about pediatric stroke to families, caregivers, researchers, medical specialists and anyone else involved with children who have had a stroke.

• Neurofibromatosis March of Dimes
• Make NF Visible Children’s Tumor Foundation

Contact our Neurosciences Center to learn how we diagnose and treat spina bifida (PDF).

Spina Bifida Association of America 
Provides education, advocacy and a national network of chapters to help people with spina bifida and their families. The website is available in English and Spanish.

Contact our Neurosciences Center to learn how we diagnose and treat stroke. 

• Life After Strokes: Research Hub that Changes Lives Canadian Stroke Network
• Strokes Can Happen at Any Age (PDF) (Spanish) American Stroke Association
• Stroke in Children American Stroke Association

Children’s Hemiplegia and Stroke Association 
Information and support for families of children who have hemiplegia or hemiparesis (weakness on 1 side of the body), often as a result of stroke. Founded by parents of children with hemiplegia.

International Alliance for Pediatric Stroke (IAPS) 
Advances awareness, knowledge and research about pediatric stroke.

National Institute for Neurological Disorders and Stroke 
A federal agency that does research about the brain and nervous system in order to make life better for people who have had a stroke or other disease of the central nervous system.

Pediatric Stroke Warriors 
Helps families navigate the journey after their child is diagnosed with stroke. Supports clinical research at Seattle Children’s and increases awareness of stroke in children.

A Stroke Can Happen at Any Age (Video 8:41) (American Stroke Association)

Contact our Neurosciences Center to learn how we diagnose and treat syringomyelia.

American Syringomyelia & Chiari Alliance Project (ASAP) 
Information, research funding and support for people affected by syringomyelia, Chiari malformation and related disorders. The group’s annual medical conference links specialists in the field with people affected by these disorders.

Bobby Jones CSF (Chiari & Syringomyelia Foundation) 
Advocacy news, research advances and information for people with cerebrospinal fluid disorders. This group works to find a cure for these conditions.

UW Medicine Chiari Malformation Clinic 
Seattle Children’s neurosurgeon Dr. Richard G. Ellenbogen leads this clinic. The website has detailed information on cerebrospinal fluid, Chiari malformation and syringomyelia.

Tics and Tic Disorders (PDF) (Spanish)

Tourette Association of America
A nonprofit group that works to make life better for all people affected by Tourette syndrome and tic disorders.

Autism and Tic Disorders

• Outpatient EEG Tests (PDF) (Amharic) (Arabic) (Russian)  (Simplified Chinese) (Somali) (Spanish) (Vietnamese) 
• Sedated EEG Tests (PDF)
• Seattle Outpatient EEG Prep Book: What to Expect During Your Outpatient EEG Test at Seattle Children’s (PDF) (Spanish)
• Seattle Inpatient EEG Prep Book: What to Expect During Your Inpatient EEG at Seattle Children’s (PDF) (Spanish)
• North Clinic Outpatient EEG Prep Book: What It’s Like to Have an Outpatient EEG Test at Seattle Children’s North Clinic (PDF)
• After Your Child’s Inpatient EEG Test (PDF) (Simplified Chinese) (Spanish)
• After Your Child’s Outpatient EEG Test (PDF) (Russian) (Spanish)
• What to Expect During EEG Monitoring at Home (Ambulatory) (PDF) (Somali) (Spanish) (Vietnamese)
• Inpatient EEG Tests: Long Term Video Monitoring on the Epilepsy Monitoring Unit (EMU) (PDF) (Spanish) (Vietnamese) (Russian)
• Prolonged Video/EEG Monitoring (PDF) (Spanish)
• Wada Test (PDF) (Spanish)

Getting an EEG at Seattle Children’s (Video. 6:19)

• Neuropsychology Evaluation (PDF) (Russian) (Spanish)

• Lumbar Puncture With Nusinersen (Spinraza) (PDF) (Spanish)

• Transitioning to Adult Care Providers for Tuberous Sclerosis Complex (TSC) (PDF) (Spanish)
• Transitioning to an Adult Neurology Provider: Information for Parents and Caregivers (PDF) (Spanish)
• Transitioning to an Adult Neurology Provider: Information for Teens and Young Adults (PDF) (Spanish)
• Seattle Children’s Transitioning to Adult Healthcare