Pediatric Epilepsy Mentor Program

The Pediatric Epilepsy Mentor Program provides support to families by connecting them with those who have dealt with similar situations.

Who are Epilepsy Mentors?

The Epilepsy Mentors are a group of trained volunteers that offer phone and email support to other parents regarding their child’s healthcare journey.

The Pediatric Epilepsy Mentor Program was created to help you:

  • Connect with another person who has faced similar challenges
  • Feel more confident and empowered about caring for your child
  • Learn some practical, everyday tips
  • Improve your awareness of other support services that can help you and your family

To be matched with an Epilepsy Mentor:

Complete this online Mentor Matching Form.  You will be asked to provide your contact information, some basic information about your child and their diagnosis and what you would like most from an Epilepsy Mentor.  This information will be protected by us and kept in the strictest confidence, according to HIPPA regulations

When possible, we match parents by:

  • Child’s diagnosis
  • Specific concerns or questions the family hopes to address
  • Child’s age

While we try our best, it’s not always possible to match based on all these criteria.  We will match you as closely as possible with another parent facing similar challenges.  Once you are matched, an Epilepsy Mentor will contact you within a few days.  After your first call with your Epilepsy Mentor, you will be asked to fill out an evaluation to let us know how the call went.  If it went well, you and your Epilepsy Mentor can take it from there.  If things did not go as you had expected, you can request that another Epilepsy Mentor contact you if you like.

All conversations with the Epilepsy Mentor are kept in strict confidence.  Epilepsy Mentors are volunteers at Michigan Medicine and have been trained through our Patient and Family Centered Care Program.

For More Information

Email the Pediatric Epilepsy Mentor Coordinator at PedEPIMentorProgram@umich.edu.

EVALUATION SECTION

Pediatric Epilepsy Mentor Program Mentor Evaluation

Thank you for participating in the Pediatric Epilepsy Mentor Program!  We would like to know how your first conversation went.  If things went well, please let us know and you’ll continue to be supported by this person.  If things did not go as well as you had hoped, you can request a new mentor.

This information will be protected by us and kept in the strictest confidence, according to HIPPA regulations.

Your comfort is of utmost importance to us.  Please answer the following questions as honestly as you can.  The form will be sent directly to our Pediatric Epilepsy Mentor Coordinator and will be kept in the strictest confidence.  If you indicate that you would like to speak with a different mentor, our Coordinator will assign a new one.  After that conversation, we would like you to complete this evaluation again.

Meet Our Pediatric Epilepsy Mentors

Leslie Pediatric Epilepsy Mentor

Leslie

I’m an RN and work in a pediatric primary care practice. My son had his first seizure at 3 but seemed to stop having them until he was 9 and was diagnosed with epilepsy. His seizures were manageable until the summer before his freshman year of high school when they became more frequent and more severe. We had to be with him 24/7 because he would fall at times. He had epilepsy surgery at the end of his freshman year. He had his left occipital lobe removed and had a long recovery academically. He had always been a really good math student but had to repeat algebra 1 after his surgery. He spent his sophomore year of high school regaining what he had lost academically. He was incredible and brave and never complained. He says now it was a very hard year. He went on to do very well and is currently a Jr at College of Wooster in Ohio. He plans to go on to Grad school and become a clinical social worker.

I became involved with the mentor program after his surgery. He and I were also both on a grant committee in Pediatric Neurology doing work on transitions to adult care. He still has a few more months before he is 21 and has to move on to adult neuro himself.

Aurora Pediatric Epilepsy Mentor

Aurora

Hi! My name is Aurora. I was born and raised in Mexico City. Our epilepsy journey began when Valentina was just one month old, although her seizures were briefly controlled, she was not hitting any milestones for her age. A little later, when she was 5 months old my husband was transferred to the U.S. due to his job, first to Louisville KY and later to Michigan. Shortly after our move, Valentina was diagnosed with 1p36 deletion syndrome, infantile spasms, and later, Lennox-Gastaut syndrome.

We have found at C.S Mott Children’s hospital a great team of specialists that have supported us through our journey with the Ketogenic diet, many different medications and a VNS.

Although Valentina’s epilepsy journey is not over, she is the happiest most loving girl who always has a smile to share. She loves going to school and being with other kids. She has been described as a social butterfly by her teachers and therapists and her love for disco music and dancing is infinite.

In my free time I love baking, cooking, reading, learning new things and musical theatre.

Stacey Pediatric Epilepsy Mentor

Stacey

Hi! My name is Stacey. I am so happy to be part of the parent mentoring program within such a life changing department. Being a stay-at- home mom of three fun teenagers (17-year-old twin girls and 14-year-old son) keeps me busy. When I’m not running them around, I love to workout and dabble in interior design.

We came to know the amazing people of Pediatric Neurology when my son, Sebastian, was diagnosed with epilepsy at age 10. He tried multiple medications, but his seizure persisted. After further evaluation, we decided to move forward with surgery. He had a right temporal lobectomy and has been seizure free since October 2018. This Little Victor of mine loves tennis, playing video games and biking with friends.

Thank you to all members of the Mott Pediatric Epilepsy Team!

Brittany

Brittany

Hey There! My name is Brittany and I am excited to be part of the parent mentor program! I am a stay-at-home mom to my three beautiful kids that are ages 6, 4, and 1. Our journey with Mott Neurology started when my oldest son David started having seizures at 8 months old. After many hospital visits, stays, and unexplained seizures he was eventually diagnosed with Dravet Syndrome through genetic testing. Over the years, I have come up with my own system of tracking seizures, communicating with doctors, and finding amazing support groups of parents with similar experiences. I am excited to connect with other parents and help them to do the same!