How Far Would you be Willing to Go?

Now I’m on a blogging roll. It’s the new me…wrapping up 2015 with two posts. Impressive.

We’re ready for a low-key, boring Christmas around here. No company, no parties, nothing major going on. Time to exhale.

We finally pulled the trigger on starting CBD oil (medicinal marijuana, hemp oil, CBD, weed, etc) with Lola after ordering it in the summer. I had it shipped to my sister’s while we were in Sarnia, thinking that if it was held up at the border, I was only a few miles away. We had no issues, and the oil was delivered right to the door. It is the same Cannibidiol oil that you’ve seen on the news: Charlotte’s Web, right from the Realm of Caring in Colorado. I had zero expectations, but decided to try it anyway. We were at the point where we had “exhausted all options” according to our neurologist, who was suggesting we revisit the Vagus Nerve Stimulator again (basically a pacemaker for her brain, to be implanted in her chest and wrapped around her vagus nerve). I decided to open the conversation with him regarding MMJ, and did not receive any helpful information. It was as though I could see the “closed” window in his eyes shuttering as I spoke. After doing some research prior to the appointment, I discovered that no new MMJ prescriptions could be written by any doctor at the Alberta Children’s Hospital. Also, there were current MMJ patients whose prescriptions were no longer being renewed. That would explain the neurologist’s response.

Lo and behold, on October 12, 2015, I decided to add CBD oil to Lola’s current drug regimen. She is currently on Perampanel/Fycompa as well as Zonisamide. Within a few days of being on the oil, her seizures were less frequent. Hmm, we thought…wishful thinking? Just an upswing? A couple of good days, perhaps. Now that we are nearly 12 weeks into our trial, we are continuing to see positive results. We visited the neurologist again for a check-up in early December, and I fessed up to our new med. It was fairly comical to see how quickly things turned in that meeting. He was quite shocked (which was strange considering I told him my plans), and curious as to how I knew dosages, percentages, etc. He immediately ordered an EEG as he doubts my seizure reduction findings. He said that parents are often overly optimistic (no kidding) and their findings are skewed. I don’t doubt any of that. What I do know is that we were desperate enough to take measures into our own hands and risk criminal charges in order to help our daughter. Are our results overly optimistic? Maybe. I know that we haven’t seen a tonic clonic seizure in a few weeks. I also know that she now has some days without seizures. These are all really positive things that we cling to. She’s doing great at school, and we aren’t seeing any negative side effects.

I’ve had friends ask me if I’d tried it (I haven’t – it smells really bad – like cigarettes soaked in oil). It’s also expensive (a bottle is approximately 300 USD plus shipping and customs), but that should last us a couple of months. We give it to her twice per day, two hours ahead/following her other med administering. Is this our miracle? It’s too soon to say. We don’t take anything for granted. Let’s just say so far so good.

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  1. There is no answer to the title of your blog because, as a parent, your inbuilt drive is to go to the ends of the earth for our kids. I have always known that you are one pretty determined woman – even in our teens you kind of did your own thing, while still considering the feelings and opinions of others. You are now doing this for Lola. I love your bravery, tenacity, honesty and pure love for both your kids. I mean…you let Liam wear rainbow nikes for god’s sake! LOL!

    I think you that while you’re always hopeful I also think of it more like, imagine the possibilities. And that’s what you’re doing, as a family and I applaud that.

    Lots of love from the Five Fales.

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