Like all toddler boys, Gavin was fun, loving, and very active. He was meeting all of his developmental milestones. Yet things were not quite right.
Gavin would kind of “check out” and stare off while you were talking to him. When kids are little, it’s hard to pin down what is really going on. As time went on, though, I started to see more things that made me think we needed to see a doctor.
I remember a couple of times when we were swimming, Gavin just fell under the water. Of course, this made me very nervous. Another time, we were seeing his occupational therapist and Gavin stopped talking mid-sentence…mid-word, actually. I could tell this wasn’t the normal 3-year-old just getting distracted or trying to find a word. That is what finally pushed me to call the pediatrician. I had to get answers to “is this normal and what is going on?”
Right before Gavin turned four years old, he was diagnosed with childhood epilepsy. My husband and I were devastated. What did this mean for Gavin? Would he have a normal life? Would he grow out of it? Would he forever be stigmatized?
After Gavin was diagnosed, he had a difficult time adjusting to his medications. Being four years old, he didn’t understand what was going on and why he had to take “medicine” every day. We thought, “How are we going to make it through this?”
A Game-Changing Event
When Gavin was six, we participated in a local epilepsy walk. This turned out to be a game-changer for Gavin. He saw how many kids his age were dealing with epilepsy. His sports teams and teachers supported him by participating in these walks, too. This was very encouraging for Gavin and definitely empowered him!
Our neighborhood was also a huge help. They were very friendly and accepting, which helped Gavin better accept what was going on. We’re thankful we had a good support system to help us. I think it played a big role in helping Gavin mature and embrace his epilepsy for what it was.
Our Doctor’s Support
Our neurologist was a game-changer as well. She was so relatable and understanding. When Gavin was in third grade, she recommended an overnight EEG. He had never had a test this long before and I was worried about how he would take it. I knew Gavin would not do well in a hospital setting; he’s very empathetic and it would destroy him. He is also very active and constantly moving around – he would play every sport he could!
Gavin’s First Home EEG Test
Our doctor told us that Gavin could have the EEG test done in our home. Rather than lying in a hospital bed out of his element and being miserable, Gavin could be at home where he was more active and more likely to experience an event. I thought this would help our doctor get a better picture, so naturally, we decided to go that route.
Gavin’s first in-home EEG test was not the best experience. The EEG Tech that came to set-up the test did not explain things well enough and Gavin just did not understand what was going on.
The Final Game Changer: The Stratus Tech
Gavin has had three in-home EEG tests since then, all with Stratus. Since Gavin’s second test, we have had an amazing EEG Tech! He explained everything to Gavin and was very friendly and understanding. He wanted to make sure our whole family was a part of this experience with Gavin. This attention has made the test as close to pleasurable as it gets, which means Gavin’s doctor gets the information she needs.
Gavin is now 11. Recently, his baseball team was scheduled to play at Cal Ripken Stadium in Maryland—a big deal for his age bracket. Gavin was scheduled to pitch, but the only way he could go was if we quickly had another long-term EEG to prove he was seizure-free.
Gavin stressed about getting the test. I didn’t want that stress to get in his head and take away from his experience with his team! Stratus was so responsive and quick, we were able to get Gavin’s test done in time for him to go to Cal Ripken stadium and pitch. I’m thankful for everyone who helped get everything taken care of so fast.
At a very young age, Gavin had to wrap his head around something that was bigger than himself. I am thankful we had a community of people, including our tech, who helped us early in our journey and continue to help Gavin today!