Eli was diagnosed with childhood absence epilepsy in 2013, when he was 6.5 years old. His symptoms had been around for longer than that…at least a year, but I didn’t know that it was something as serious as a seizure. If it hadn’t been for a friend on Facebook describing her own son’s seizures and diagnosis, I would have never even thought of it. If you’re unfamiliar with this type of seizure activity, don’t worry…so was I! It manifests itself as what appears to be the person “spacing out”…Eli will kind of stare off into space for several moments, and then after will just be completely normal again, with the exception of not having heard anything during the seizure. He doesn’t fall on the ground, there is no violent shaking, and again, within moments he’s back to his normal self. We thought Eli was just daydreaming or ignoring us.(I kick myself a little every time I think about this…)
Eli went to several doctors appointments, had a sleep-deprived EEG, an MRI that required dye injection, and trips to see a neurologist. We learned that USUALLY children will outgrow this form of epilepsy when they hit puberty, but that occasionally the absence epilepsy will develop into a more severe form of epilepsy. We learned that there were a handful of medications that are approved for the treatment of childhood absence epilepsy, that many don’t really work that well, and that the side effects are often severe and more prevalent than relief from the medication.It might work, it might not…but he would most likely have side effects. I asked about not medicating him. His neurologist was honest: that was totally an option. If Eli was able to lead a fairly normal life without meds, and wasn’t in danger of getting hurt…he would be a good candidate for just pushing through until puberty to see if the disease would disappear. We made the decision to let our 6.5 year old tough it out until puberty.
That isn’t the end, though. I became the person who then researched everything. I was willing to try everything in my power to make his quality of life better during this time. I read about how certain vitamins and minerals could support his system. Probiotics should help to heal his gut, which could help. I’d already been using essential oils for many years and tried to find out if there were any that I could use to support Eli. I read about changing our diet, which was our first round of the Whole 30 elimination diet. After that, we tried Paleo for a while, but Eli was missing some foods so much that I didn’t force him to stick to that. Nothing we were doing completely eliminated Eli’s seizures but many helped to markedly decrease the number he experienced. Lack of sleep and stress are huge triggers for his seizures, so we set a bed time that USUALLY gets followed. He has good and bad days. For a while, the good outnumbered the bad. As he got older, it seemed to bother him more that he had these seizures. It wasn’t because he felt different…he was bothered because he just was tired of having them. That’s a tough thing to hear as a mom.
This autumn, we noticed something different. His seizures had decreased significantly and when he did have them, they were much shorter. This is good, right? Yes. Also, no. The “no” comes in the form a different type of seizure activity. Eli was just “not here” for about 15 minutes. I could talk to him, he would look at me and respond with one-word answers that sometimes didn’t make sense. He was unable to hold a conversation. After what was a terrible and long 15 minutes for me, he was COMPLETELY back to normal. What in the world? The first time it happened, I figured he was really tired. The second time it happened, I got a sick feeling in my stomach. The second episode, Eli explained what it was like from his end: his thighs tingled (he had mentioned this to me before the episode), he could see and hear me talking to him but he felt like he couldn’t answer me. It was kind of like a tunnel, but not really. He was completely aware of the entire thing, he just couldn’t talk to me. Back to research…was it something worse like simple partial seizures or even complex partial seizures? What would this mean for him? Sure, he was having less absence seizures but was he trading those for less frequent, worse seizures? ugh.
That’s where the background ends. We are currently in the first week of trying a different, natural approach to help my buddy.