“Despite her challenges, she has learned to express herself through facial expressions and lights up when she hears music, and smiles and squeals when she is tickled. When the wind blows across her face and hair, she gets a look of delight. “ ~Emma’s mom 

 

You are not alone. There are hundreds of parents who have walked this journey before you, and are here to help you. Join the family network: Family Contact list.

TIPS FOR FAMILIES WHO WERE RECENTLY DIAGNOSED

  1. Take a deep breath! 

  2. Find a pediatric epileptologist (epilepsy specialist)  

  3. Discuss the ketogenic diet as an option for seizure management with your doctor. This can be an effective non-sedating option for seizure management. Get the basics here. Learn more about the science of the keto diet here. Find a specialist here.

  4. Request a heart check-up with EKG

  5. Start a folder to track medications, symptoms, seizures (number and duration). Learn about seizure types here.

  6. Develop a seizure action plan with your epileptologist (Epilepsy Foundation) 

  7. Understand all medications and proper use of rescue drugs, ensuring you have plenty on hand. 

  8. Understand risk of SUDEP (ask your epileptologist about whether a monitor could be useful) 

  9. Apply for assistance - Medicaid programs can help with costs of care. Access a list of financial support here.

  10. Get prescriptions and referrals for support services such as physical/occupational/vision therapy and equipment (shower chair, stander, oxygen monitor) 

  11. Talk to your family and other children about the condition 

  12. Find a parent support group (there are several Facebook groups for KCNT1 specifically as well as epilepsy more generally). Email us and we will invite you!

  13. Create a seizure diary through the Epilepsy Foundation   

  14. Start a Caregiver Respite notebook from Child Neurology Foundation 

  15. Sign up in our Family Contact List and Enroll in the patient registry here

  16. Obtain a copy of your genetic reports for your records.

We are here to support you. Fill out this contact form and we will match you up with a parent support specialist who will reach out.