Weeks 3&4 – Eli

I got a little behind with blogging. Studying and making Christmas presents will do that to you!

So where are we at with Eli? I’ve seen some huge improvements. I haven’t seen Β any of the longer, partial type seizures in two weeks, and Eli said he hasn’t experienced any of them. That in itself gives me hope. He’s still having the absence seizures but the ones I’ve witnessed have been very short…maybe 3-5 seconds. It’s basically been a month and we just adjusted dosage a little so I think it’s just a matter of patience and waiting now.

 

 

Week 2 – Eli

We seemed to take two steps forward and one step back. Eli had another of those longer seizures on Monday morning. It was in the morning again…seems to be the time of day that is toughest on him. He was sitting on the couch after getting ready for school and I looked over to see a strange look on his face. I asked him if he was okay and he said “I don’t know…” and then he was out of it again. On a positive note, it wasn’t as long as the two previous ones I witnessed. Disheartening for me, but I know these things take time. I really think we need to make further adjustments to his diet. He was doing so well when I had him gluten-free and minimal grains. His diet is by no means terrible, and the large majority of his meals are homemade. There are two areas where I think it suffers in regards to his health: one, breakfast. He is a very carb-loving type breakfast person. Give the boy waffles, oatmeal or pancakes and he’s happy. The big problem there is that he isn’t getting much protein or fat, both of which are important for brain function but particularly the good fats! I wish I could get him to like eggs. Second area is lunch, specifically the school lunches I pack for him. He would be happy taking PBJ sandwiches and turkey roll-ups on tortillas every day. Again, these are carb heavy and grain heavy, both of which tend to be negatives for epileptics. I need to find some different breakfast and lunch recipes for him, and I really hope we can try some new things. I don’t want to get too restrictive with his diet because that is when he started to resist me in the past.

We’ve also decided to try adjusting his dosage amount a little. We started with the most conservative dosage amount, and he hasn’t experienced anything worse or side effects. It hasn’t even been two full weeks so I’m not too discouraged. The mom in me really wants to see him have relief from this.

Background – Eli

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. IfΒ  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.Β  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?Β  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.