Something interesting has been very prevalent in my life for the last seven years. I have a daughter who has an untreatable medical condition. A very severe case with no treatment known to science. Of course you have to go through everything that’s available in terms of treatment, but you reach a point where you have to look outside of the box. In the very beginning when Charlotte was three months old, I waited with her in the ICU and the ER’s, waiting to try her first treatment from three months to six months. At the time she was on nothing, and having these massive seizures. She has epilepsy- Dravet Syndrome. And in the emergency room, you can imagine these doctors thought I was nuts because I didn’t have her on a daily treatment yet. She wasn’t having as many seizures back then as she was when she was five years old, when was having hundreds and hundreds a week. But back then she’d have one or two a week, and they were hours long. They could be two hours long, land her in the hospital, the emergency room, or in the overnight stays in the ICU on the ventilator.
We were told these could just be Febrile seizures, which can happen in children when their body temperature gets too high. Because it’s really strange to see a new born baby with seizures that bad, so this was probably a one off thing. At least, we hoped it was a one off thing. A temperature never registered by the time we got to the hospitals, but we wanted to listen to the doctors saying it’s no big deal and we don’t need to put her on phenobarbital for the rest of her life. Saying that she might have a seizure when she’s teething, or sick, but it’s probably going to go away and it’s no big deal. And so, of course I’m happy to not put her on a permanent medicine for the rest of her life as a new born baby. What are the side effects? They’ve never tested these drugs on a kid, so I’m reluctant to do that. I’m doing as much googling as I can, trying to deal with this. When she was in that period from three to six months, she was on no medication, just the emergency meds we were giving her in the ambulance. She would get intravenous emergency rescue drugs to stop the seizures.
We then had Child Protective Services called on us saying they were going to remove her from our care if we didn’t go to the doctor and put her on a medication. It was probably the ER doctor or the head nurse who called, wherever we were at the time at the ICU. They probably wondered why this kid, who’s been in here a couple times now, is not on a daily drug to prevent her from coming in here. It’s the worst feeling in the world for other people to think that you’re harming your own child. Here I am, alone- my now ex-husband who was then in Iraq or Afghanistan- me in the hospital with these three kids, doing my best. But I imagine it doesn’t take much for them to fire that warning off, and then the paper work is started.
What they really wanted was for me to set up an appointment with a pediatric neurologist- an epileptologist and start on that road. The doctors at the hospital were just ER doctors, I don’t know if we saw the same one twice. So they wanted her on a regimen, and a daily drug. So I said okay, let’s get her setup with an actual neurologist. And we started down that path with all the medications, trying over a dozen.
Fast forward to her at five years old. None of the drugs work. And you can’t remove them because they cause seizures just as much as they stop them for some people. I think she was on six drugs at one point and two of them were not daily drugs. They were supposed to be emergency drugs, but regardless, nothing was working. She was spiraling out of control. At five years old she was pulled off of her last drug, and essentially sent home to die. We were told “there’s really nothing else we can do,” so we brought her home to try to give her maintenance for the rest of her life. Her short life, which wasn’t expected to be more than a month longer.
So I had to look outside of science, which didn’t have the answers for her, and go down an unconventional route. We were threatened, and didn’t have the answers. Looking into non-traditional plant science is where I came into cannabidiol, or CBD, and cannabis as a therapy route for Charlotte. Of course it’s not unheard of. It was just unfortunately a last resort for us- the last thing we did. But it’s not that unheard of in science to be able to be a “people scientist” or look into plants. Some of our medicines come from plant science. But you’re really made to feel like an outlier to even talk about controversial treatments and using them as a first line instead of western medicine. But western medicine failed us, so we started looking into plant science where we found the solution. It worked. CBD is still what she uses, seven year after we initially tried it.
Society vilifies people for asking questions and looking outside of the box at these odd new treatments. But I feel that’s wrong, I feel that we should have some way for people to be able to accept that there is more than one route. For me was gradual. I live in Colorado, with a bunch of people who were always going on about how “you should try weed, you live in Colorado, the medical marijuana state. You should give it a try”. But back then it wasn’t CBD, it was full-fledged weed. She was going to have to smoke cannabis- to inhale it. I felt she needed to reach a certain point before THC and getting her high with weed were going to be options. And then she did reach that point, with just an absolutely massive amount of suffering. Not a moment of her day was not absolutely devastating. To where I just needed to find something, anything. At that point I was looking at it for the suffering, where the idea was to get her high and try to ease her suffering. Which is a totally legitimate thing to do, right? We take opioids and all kinds of substances when people are in pain or suffering at the end of their life. And that’s totally acceptable. I’ve never heard of someone leaving surgery without some kind of opiate, so I was really looking at cannabis to perform a similar task in easing her pain and suffering.
But I had to fight against the stigma, because especially in those days the message was coming from cannabis activists. It didn’t look medical, and they wanted me to give it to my five year old. This source made it difficult for me as it wasn’t coming from science. I asked myself, what if it made her worse? So many what-ifs that science wasn’t there to answer. But I wish we tried it sooner. That’s my shame and I have to live with it. Hindsight is 20/20. Now that I’ve gone that route, I consider Charlotte completely non-medical. I think we all deserve that, a non-medical life where we aren’t in constant maintenance of a disorder or suffering side effects of the maintenance or the disorder. And I don’t think that there should be judgment on how you get to that point.