Resource Links

by Topic From Our Friends Around the Internet 

Support Comes in Many Forms

• KCNT1 Foundation Facebook
  www.facebook.com/kcnt1epilepsy/

• KCNT1 Gene Mutation Support Group
  www.facebook.com/groups/1654437541472524/

• The Connected Parent https://www.theconnectedparent.net/

• Sibling Kits https://kcnt1epilepsy.org/vip-sibling-kits

Find an Epilepsy Specialist

• Find an Epilepsy Doctor who is member of the American Epilepsy Society
  my.aesnet.org/FindaDoctor

• www.epilepsy.com/make-difference/learning-healthcare-system/elhs-community/epilepsy-healthcare-centers-and-providers

Types of Seizures

• www.epilepsy.com/learn/types-seizures

Difficult to Control Refractory Seizures

• www.epilepsy.com/learn/refractory-epilepsy-difficult-treat-seizures

Sudden Unexpected Death in Epilepsy (SUDEP)

• www.epilepsy.com/learn/early-death-and-sudep/sudep

Diet Therapy Including Ketogenic Diet

• www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet

• www.chop.edu/centers-programs/dietary-treatment-program

• pubmed.ncbi.nlm.nih.gov/29524777

• https://charliefoundation.org 

  https://charliefoundation.org/find-a-hospital/

About EEGs

• www.epilepsy.com/learn/diagnosis/eeg/how-read-eeg

• www.epilepsy.com/learn/diagnosis/eeg   

Obtaining Early Intervention Services

• www.parentcenterhub.org/ei-overview/

• Child Find operates in every state to identify babies and toddlers who need early intervention services because of developmental delays or disability. You can use the Parent’s Record-Keeping Worksheet to keep track of this important information

How to Sign Up for Disability Benefits

• www.disability-benefits-help.org/disabling-conditions/epilepsy-and-social-security-disabilityb

Transition to Preschool and IEPs

• www.parentcenterhub.org/transitionpreschool/ https://frcd.org/iepmeetingsupport/ 

Epilepsy Sites   

• www.epilepsy.com/learn/types-epilepsy-syndromes/epilepsy-infancy-migrating-focal-seizures 

Drug Delivery and Clinical Trial Process  

• www.phrma.org/Advocacy/Research-Development/Clinical-Trials 

How to work with Health Insurance

• www.youtube.com/watch?v=cZEmt4eyaHQ

Monitors

Sami Video Sleep Monitor and Alarm - use this link for a discounted cost website

Sibling Support

Comprehensive resource list

Choosing Healthcare Providers

We maintain a health care professional referral list for our KCNT1 community. If you need information about a physician or other health care provider in your area, or would like to be added to our list, please contact info@kcnt1epilepsy.org.   Please note, being on the list does not in any way suggest the KCNT1 Epilepsy Foundation endorsement or preference for any particular individual or group.

Rare Disease Video Series

• rarediseases.org/for-patients-and-families/information-resources/patient-and-caregiver-resource-center/

• Search for info about rare diseases https://www.librarey.com

Rare epilepsy pre-recorded webinars from DEE-p Connections

• www.deepconnections.net/resource-center

Congenital Heart Defects and Surgery (MAPCA’s) 

Pulmonary atresia (PA), ventricular septal defect (VSD) and major aortopulmonary collateral arteries (MAPCAs) is a rare type of congenital heart defect, also referred to as Tetralogy of Fallot with PA/MAPCAs and is seen in some children with KCNT1 mutations 

• www.cdc.gov/ncbddd/heartdefects/pulmonaryatresia.html

• www.childrensmn.org/childrensheartclinic/downloads/8/2019/08/pulmonary-atresia-mapcas-pavsdmapcas.pdf

Medications

• www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-medication-list

• www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines

Quinidine

• https://pubmed.ncbi.nlm.nih.gov/32413583/

Cannabidiol

• pubmed.ncbi.nlm.nih.gov/32167590/ https://pubmed.ncbi.nlm.nih.gov/31926846/

Types of Feeding Tubes

• oley.org/page/ChoosingTheRightTube

• www.aboutkidshealth.ca/article?contentid=2822&language=english

• www.feedingtubeawareness.org/wp-content/uploads/2015/05/ParentGuide.pdf

How to register for Medicaid Waivers (U.S. only)

• In the United States, families can apply for a federal Home & Community-Based Waiver (HCBW), TEFRA, or Katie Beckett Waiver. This program entitles children to Medicaid coverage who would not otherwise qualify due to their family’s financial status (children may qualify independent of family income). This program is administered on a state-by-state basis and varies greatly depending on the state. The HCBW can be obtained by contacting your local Department of Family & Children Services.  http://www.kidswaivers.org

Parent Support Networks 

• Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities.  familyvoices.org 

• Parent Center Hub: There are nearly 100 Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) in the US and Territories. These Centers perform a variety of direct services for children and youth with disabilities, families, professionals, and other organizations that support them. www.parentcenterhub.org/the-parent-center-network/ 

• Parent to Parent programs offer parent to parent support as a core resource for families with children who have a special health care need, disability, or mental health concern. Through a one-to-one “match,” experienced support parents provide emotional support to families and assist them in finding information and resources  https://www.p2pusa.org/parents

Peer Support Specialists for parents of children with neurological conditions 

• www.childneurologyfoundation.org/peer-support/ 

• www.angelaidcares.org