Shift in focus

I finally reached my tipping point. After pushing for years for Elin to be considered for the Ketogenic diet we still were not beginning.... why? Oh because SCH really likes to "vet" their patients and I couldn't hang I guess. Here's the short version.

I had heard about this "miracle diet" from other parents and people in the epilepsy community when I would discuss Elin's seizure history. When Elin's seizures were getting worse and not being controlled by anti-epileptic drugs very well I raised the question to her neurologist or anyone that was helping us in the ER or the doctors during rounds while she was staying in the hospital. The answer was always the same. They had about 3 or more drugs on their list of possibilities that they preferred we try first. So we did- all of them and now she is on three anti-epileptic drugs and has apneic seizures every week. They are obviously working miracles.

So when we came back from Mexico right before Christmas I sent an email to our new neurologist (she got moved to an epileptologist) and told him we would be starting the diet. So the process began in December. Here we are into March and still no diet. We have been to SCH to meet with the Keto epileptologist (yet a different neurologist); to meet with the dietitians and nutritionists, and to have a swallow study. Mind you, she is admitted to the hospital for three to four days to start the diet so they can monitor her. My feeling was many of these things could be done during her stay. These appointments are all on top of all the other zillion "normal" appointments Elin has for her multiple health issues. When we came back from Sun Valley I sent another email stating I wanted Elin to start the diet NOW.  So I got a call to bring her back in yet again for another consultation. That did it, I was done.

I have been researching another possible option for Elin while all this was going on. There has been a lot of buzz around cannabis and its use in epilepsy. There was a 60 Minutes special a few years ago on a specific kind called Charlotte's Web that started the ball rolling I believe. I was intrigued and dove in, From all my research I think it is worth a shot for Elin. There are very few side effects and the benefits range from somewhat helpful to stopping seizures forever. So what the heck, instead of overhauling her diet and feeding her 90% fat (which can be hard on her body as you might imagine) lets try this first.

When I told the neurology and keto team at SCH I wanted to give CBD oil a chance first they laughed at me. They cited multiple reasons for their concern from purity, to efficacy and even pesticide scares. What? The biggest problem we face are the possible drug interactions with all the crazy sh*t they have her on right now. I understand that CBD oil is not overseen by a federal agency but we will be going through a naturopathic doctor and doing this as medically safely as possible. I'm not going out to the street corner and scoring some pot to bring home for my daughter to get high on. Come on people- really? It is being used as an herbal supplement/medicine. Some strains have trace amounts of THC (the psychedelic high inducing part of marijuana) but most have none so she won't even feel anything. The more we get into this the more I will learn and I will share all the details especially if it helps.

So that's our new path. It hasn't be easy to find a Naturopath who prescribes CBD and feels comfortable working with Elin. But I think we have found a winning team now and I am very optimistic about this new track.

We had to switch Elin to tablets for most of her meds in prep for the Keto diet and she hates them. Think about mashing up Tylenol and sprinkling it on your food- it pretty much tastes like poison. So she spits it out. Well, low and behold, some of the days when we knew we didn't successfully get all her meds in she was a different kid. Her eyes sparkled, she moved around more, she talked more, she laughed more. This made Myles and I realize just how drugged our daughter is. I don't even think we know the real Elin. I'm so excited to meet her- I have high hopes (no pun intended) this CBD oil will help us control her seizures more and allow us to wean her off some of her less helpful drugs.