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 ย 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.




Sun Dogs

“Sun dogs… are an atmospheric phenomenon that consists of a pair of bright spots on either horizontal side on the Sun…Sun dogs are a member of a large family of halos, created by light interacting with ice crystals in the atmosphere. Sun dogs typically appear as two subtly colored patches of light to the left and right of the Sun…” (Wikipedia)
This afternoon, the kids and I saw this phenomenon…it was much more beautiful than the first time I’d seen it. I wish I had an awesome camera so I could have gotten a good picture. I’m guessing it was more spectacular this time because of the super cold air temperature! The rainbows on each side of the sun were so wide, so bright and SO long.
I asked Eli if he remembered the first time we’d seen them. I had to tell him the story again (he was only 5 at the time). It was EXACTLY two years after we’d lost Jonah. Memories hit hard sometimes, but I’m really glad we experienced this again today. That day it took the sweet innocence of my five year old to help me see the light in the darkness.

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.

Week 1 – Eli

So, as mentioned in my background post, we are in week 1 of trying something new and different with Eli. November 8th was a big day in the United States, but for me it was a bigger and better day in North Dakota. No, nothing to do with the presidential election in this case. North Dakota voters voted to allow medical marijuana as treatment. Huge. This is such a fantastic thing for so many people. I’ve read many medical journal articles that show exactly how this is beneficial for so many different ailments. One such ailment that it has shown promising results with is epilepsy, from childhood absence epilepsy to other forms involving Grand Mal seizures. Huge. Enormous. Possible game changer.

Adam did some research online and found a place where we could order Charlotte’s Web, which is a medical marijuana supplement. This is one that I researched when we first got Eli’s epilepsy diagnosis. Unfortunately at that time, we lived in Iowa which did not allow for the use of this supplement. Now, thanks to the voters in my state, we can legally try this with Eli.

Order one placed. High hopes all around. While we waited for the shipment, we were able to gain access to a the Realm of Caring website with dosing instructions based on many different factors, research articles, forums…so much information! I became completely engulfed in the chemistry parts, probably because I’m deep into the chemistry part of essential oils in my certification course right now. I couldn’t help but notice that there are chemical components in medical marijuana oil that match components of certain essential oils. These components have been shown to have calming effects neurologically, particularly the sesquiterpene beta-caryophyllene. Hmmm…if only I’d been a chemistry nerd back in 2013 maybe I could have made better sense of some things with oils! Copaiba is particularly high in this component…usually 50% or more! But there are others such as Melissa, black pepper, clove, and ylang ylang oils that have significant levels of this component. Interesting to me is how now that I have better knowledge from a renowned aromatherapy certification course, this all makes much better sense. Chemistry is so cool.

Our first bottle arrived the 18th, the day after Eli’s tenth birthday. We started his first dose after school. As much as I wanted the heavens to part and have God himself say “Eli is now seizure free!”, I knew it was time to wait and watch. Saturday was his first day of two doses. Then Sunday…and Monday. We’re on Tuesday. Call me crazy but my kid is waking up now looking much more rested (absence seizures can happen during the person’s sleep cycle as well). Saturday afternoon was his birthday party with his friends…six crazy boys running around with all sorts of excitement and enthusiastic animation. Usually this is the sort of situation when we notice an increase in seizures. I saw ONE seizure Saturday…before his party. Sunday I saw one seizure. ONE. Monday he was at school during the day but I didn’t see any when he came home.

Call me crazy. It’s okay because I feel a little crazy thinking about it.Too early to say for sure but I’m more hopeful now than I have ever been about this possible solution for Eli.

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. Ifย  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.ย  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?ย  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.