CHOC Mom, Co-Founder of Epilepsy Support Network of OC Offers Helpful Tips

In honor of National Epilepsy Awareness Month (November), Janna Moore, whose daughter is being treated for epilepsy at CHOC and who also co-founded the Epilepsy Support Network of Orange County, provided the following guest post. These tips are intended to help parents cope with the diagnosis of epilepsy and ensure their children get the best possible treatment and experience the best possible outcomes.  This list was compiled from a survey Janna completed with 70 parents, who have more than 275 years of epilepsy experience, combined.

Attention Parents of Children with Epilepsy: Here’s a “Top 10” List You Won’t Want to Miss!

1) Find an experienced pediatric epileptologist at a pediatric epilepsy center.

2) Try and video/digitally record your child’s seizure to show the doctor at your child’s appointment.

3) Get an accurate epilepsy diagnosis detailing the seizure type or syndrome to ensure the most effective treatment for your child.

4) Join a local epilepsy advocacy organization, like Epilepsy Support Network of Orange County, to connect – through educational and emotional support groups – with other parents who have many years of experience caring for their children with epilepsy.

5) Join an on-line support group to learn as much as you can about your child’s seizure type.

6) Start a medical notebook: track/record seizures – dates, times, triggers, in addition to how it started and what it looked like. Details are very important for the doctor.  Get yourself a calender, a log sheet, or sign onto “Seizure Tracker”.

7) Ask your child’s doctor about the emergency epilepsy medication, Diastat, if your child’s seizures last longer than 5 minutes or cluster.  Call 911 if child is experiencing 1st time seizure or if a child with epilepsy has a seizure lasting longer than 5 minutes.

8) Educate yourself about your child’s specific seizure type once you get an accurate diagnosis.

9) Train your family members, child care providers and teachers on seizure recognition and first aid so your child is safe in any environment. You can schedule this presentation through Epilepsy Support Network.

10) Keep an eye on cognitive abilities and report to the doctor if you see a decline, which could be seizure -related.  Watch for behavioral changes, as well.  Be sure to address cognitive, behavioral, social issues if they arise – the sooner, the better.

Janna Moore’s daughter was diagnosed with epilepsy when she was 3 ½ years old.  She and her family experienced several challenges along the way, until arriving at CHOC Children’s, where she was seen by Dr. Mary Zupanc, director of CHOC’s Comprehensive Epilepsy Program.  Janna is a co-founder of the Epilepsy Support Network of Orange County, for which she currently serves as director of programs and services. 

Related articles:

  • A Teenager With Epilepsy: Stephen’s Story
    In Recognition of Epilepsy Awareness Month, we spoke with a teenager with the condition to learn more about life with epilepsy, and what advice he would offer a newly diagnosed ...
  • Kara’s Story: A Journey with Epilepsy
    Heidi Sexton knew her young epileptic daughter, Kara, needed more help. Anti-seizure medications didn’t help, hospital visits were frequent, and seizures and tantrums continued. “It was time,” Heidi recalled. “I went ...
  • Keeping A Close Watch
    By age 4, Grace Rogers was riding a bicycle without training wheels. She was roller-blading and skateboarding—an active, spunky kid growing up in Buena Park with an older sister and ...


3 thoughts on “CHOC Mom, Co-Founder of Epilepsy Support Network of OC Offers Helpful Tips”

  1. Awesome article! Epilepsy Support Network of OC is a wonderful group of people, and I encourage anyone that is effected by Epilepsy in that area to join the group. I have attended meetings they have and always learn something new, even having lived with Epilepsy for 15 years. Great job Janna!

  2. Thank you so much for this! Its so helpful to have all these tips available in one place. I have a child with epilepsy, and am grateful anytime attention is drawn to this issue, and issue that affects so many yet receives such little attention and recognition. I am also a teacher and have a family affected by seizures- mom, aunt, and all 4 children. It will be wonderful to be able to print this out, hand it to them, and refer them to ESN of OC.

  3. I have a 6 year old daughter, who has a cyst/ tumor in her brain. It is causing seizures. We have been to 3 neurologist and 2 neurosurgeons . . So far. All of them reccomend for her to be seen by an epileptologist/ epileptology center. Between insurance and doctors, she has yet to be diagnosed with what type of seizures. I am fighting for my daughter to be seen at choc. I’m so glad to see this blog. It is very helpful! This list is everything I have been trying for since 6 months ago when her EEG came back abnormal. Thank you for the information!!

Leave a Reply

Your email address will not be published. Required fields are marked *