Join Us in Supporting Ellie’s Epilepsy Battle

Hi everyone, this is Kristen Strickland (and Chris Strickland). We are Elenore Riley’s parents. She goes by Ellie

She has had a 10+ year journey with Epilepsy. Diagnosed with Primary Generalized Epilepsy at the little age of 2, almost 3, in February 2014. Managed by Neuro and Keppra (anti-seizure med) for a long time.

We noticed learning challenges as early as preschool and had an IEP during 4’s and into elementary school (up to halfway through second grade) when we decided it was best to bring her home. Homeschool was and still is the best option for Ellie, who will be 14 on May 6th!

We (Neuro, her daddy Chris, and myself) all thought she outgrew Primary Generalized Epilepsy and was off Keppra for a year and a half until seizures came back with a vengeance in January 2023. This was a shock for her and for us. Maybe not for Neuro, because there is always that small percentage of patients that can have recurring seizures throughout their lives. But we were devastated. We carried on though, daily.

Then, in 2024, it seemed her seizures were changing and becoming more frequent, but we weren’t quite sure. On December 1st, 2024, she was at a long-awaited Pentatonix Concert with her Daddy when 45-50 minutes into the show… breakthrough tonic-clonic (grand-mal) seizures happened. I got a call from Chris at 8 pm, 2 hours away in Columbia, SC, that this had happened. I felt so sad and far away. But I knew Ellie was in the best hands with her well-trained first responder daddy and all of the helpers around them. She/we got through this. Keppra med was increased. Good to go, right?

Not quite… Ellie started having almost daily mini episodes (10-30-45 seconds), but we were not 100% sure if they were seizures. So we sought medical support from her primary to rule in or out Pre/Diabetes because of similar symptoms she was showing and having. But after tests, etc., that was all in normal range and functioning well.

Neuro was contacted. We described what was happening. Ellie was seen in the office on February 18th (also as a follow-up to the December 1st seizure and med increase). She ended up having a mini episode at that appointment. Neuro doc witnessed it. An ambulatory 24-hour EEG was ordered. We would hear soon. But on the drive home, Ellie had breakthrough tonic-clonic (grand-mal) seizures again… this time in a moving vehicle; which would scare anyone and everyone. We had her transported to the ER so that we could also push for an immediate 24-hour EEG admission. Which our efforts were successful.

Ellie HATES EEGs! The numerous leads placed on her head/scalp over the years really bother her and have created even more sensitivity. (She was also diagnosed with high-functioning Autism in August 2024, so that has some to do with it as well). But, we convinced her to go through the testing again. She was brave

The results were told to us by a Pediatric Epileptologist (Neurologist in the same office as Ellie’s main Neuro doc). The long-term Primary Generalized Epilepsy diagnosis was now replaced with Focal Epilepsy. Say What?

Focal discharges were noted throughout her brain, but we would need a brain MRI with the highest imaging sometime in April. I was like… April??? That was 2 months away, which felt like 2 years when a parent(s) desire to know NOW. So, the plan was an increase in Keppra, again. But that didn’t work. Focal seizures were daily.

So, a new to us med, Trileptal, was added, which targets Focal Epilepsy seizures directly. Keppra is more broad spectrum. Made sense. But each week or so, Ellie’s dosage has to keep being increased because focal seizures were still occurring… ugh!

Time for a Brain MRI… which occurred the evening of 4/22 (sadly the day Ellie lost her Nana, my mother but we knew her spirit was surrounding her) Results were told to us the next day, 4/23…

Ellie now has Left Temporal Lobe Focal Epilepsy (TLE) with Mesial Temporal Sclerosis (MLS), which basically means the parts of her brain in that area, including the hippocampus and amygdala (which are part of cognition/memory/emotion, etc.), are losing neurons. This can be caused by prolonged seizures over the 10+ years. What terrible news to hear for our girl!

Plan? Keep Keppra dose the same. Increase Trileptal again. And a referral to the Epileptologist based on the new diagnosis.

Ellie went seizure-free for a week! Yay!

Then… Friday morning (5/2), I witnessed breakthrough focal to tonic-clonic (grand-mal) seizures again… multiple times here at home; as our sweet girl was just trying to get ready for the day. She can’t be alone, honestly. It’s out of control. I am grateful Chris was off duty and that we could tag team support Ellie. Like always.

Trileptal was increased for the 5th time in less than 2 months (yes, you read that right) and is now at the same mg dosage as Keppra.. both at a max of 750mg twice each, daily totaling = 3,000 mg per day of antiseizure medications!

The toll that these multiple diagnoses are taking on her, holistically, is very concerning, but we are doing the best that we can as her parents to help, support, protect, and guide her through this tumultuous time. While waiting (but pushing for an appointment with the Epileptologist asap)…

We are now finding that we need some more support financially outside of what our insurance will cover. It’s all adding up, and there are multiple resources, tools, and supplies that Ellie is needing and will need in the days, weeks, months, and years to come.

Would you be willing to come alongside us as a family of three to help make some of this more possible for her? Even if it’s a $5 contribution for the month of May for her birthday 5/6 or in support of Mental Health Awareness month (May as well)?

Thank you for reading and considering, and we hope most of all that everyone continues praying

Much Love ❤️

Stricklands