Gavin & Intractable Epilepsy

How was the diagnosis made?

Our epilepsy journey started just a few days after Gavin’s 5th birthday. He wasn’t feeling well, so we just allowed him to rest on a chair. Then we heard this noise - honestly we thought he was joking around! When we went to check on him, we then realized it was serious. He was gurgling from his mouth and not responding. We contacted 911 straight away. 

It was scary and we didn’t know a thing about seizures or epilepsy at the time. The paramedics at the hospital put the seizure down  as a fluke because he was unwell. 2 months later, Gavin had another seizure. This time we knew it was a seizure pretty fast and called 911.

Following these events, we began treatment at the Children’s National Hospital in Washington DC; he had an MRI and Gavin was diagnosed with epilepsy. The MRI found a brain abnormality in Gavin’s temporal lobe so we started with medications to treat the seizures. 

How did Gavin’s condition develop?

Following this diagnosis, he was prescribed Trileptal and had 2 years of seizure-freedom, with minimal side effects. He was otherwise progressing well in sports and academics. 

Our next challenge came in 2018 when Gavin turned 7 years old. A seizure came out of the blue, the following day he had a cluster of seizures. It was really difficult as Gavin experienced status epilepticus, and we had to go back to trying new treatments and medications. We tried laser ablation surgery. This was minimally invasive, and we had a fantastic neurosurgeon who answered lots of the questions we had. 

Unfortunately, a month later, the seizures came back. Gavin went through an EEG which showed that the seizures are localized from different parts of his brain, making treatments difficult and complex. We are still dealing with seizures on a daily basis. 

Read more: What causes epilepsy in children?

Gavin’s strength is inspirational, what is his mindset like?

He’s a fantastic communicator and is so mature for his age! He can always let us know how his medication is making him feel and during epileptologist appointments, he will always advocate for himself using his voice. He tells the doctors how his epilepsy is impacting him, and can express details like the severity of his seizures. Of course, he has his days, but he has a really incredible and admirable mind set for someone so young. We are so proud of him!

How do you find using the Epsy App?

It’s amazing! It’s so user friendly. I absolutely love that I can log all the details about his condition; seizures, degree of seizure severity and his rescue medications. The calendar view gives me a really great overview of patterns in seizures. Being able to share that with our doctor is very useful.

Epsy App users can connect with their epileptologist or neurologist via Epsy Hub, the platform for healthcare professionals. Find out how to connect with your doctor here. 

Can you tell us a little bit about how you keep hope and faith?

Epilepsy is the most isolating experience I have ever had, and it’s not even me who has epilepsy. Sitting in waiting rooms alone is really lonely. Gavin gives me strength; I want to give him the best his life has to offer. He has a great support system of friends and family who have been there for us; one time my friend's husband saw us heading to the ER in an ambulance. She texted me saying “do you need me to come and pray with you? I’m here for you”. It meant so much to me, it’s moments like this that can help you through.

Read more: How to find epilepsy support groups

Is there much support for caregivers? 

Following Gavin’s surgery, we became active in the Epilepsy Foundation here in Maryland. We met other families and have since joined support groups. We have also joined several advocacy projects, such as Seizure Safe Schools. It’s a good way to outlet all that built-up energy! 

Gavin gave a testimony about his epilepsy in front of legislators at just 9-years old - he’s so brave! It gives him a sense of feeling like he’s combatting epilepsy. Epilepsy can feel helpless at times, and it really helps our family to advocate. 

What is your message to other caregivers?

Epilepsy can be very challenging. From my experience, reaching out to others and asking for support is really helpful. Connect with others on a similar journey. Don’t lose hope and take everything day-by-day, focus on those good times and cherish them!