That day's seizure was more intense than normal. They usually only last a few minutes. That one needed extra care.
The seizures are not as bad as they once were. There was a time that she would have them multiple times a week. Now they are confined to just a couple times a month or when something stresses her. Recently, my father had knee surgery. She worried so much that for several days she had seizures.
Her epilepsy is not as severe as some others. I have read stories of epileptic patients having as many as one thousand seizures a week. I couldn't imagine what that would be like.
Lacie, and individuals like her, live their lives constantly on strong narcotics.
There is a drug, though, that has shown great promise for epileptic patients. It's a simple oil, cannabidiol or CBD, that is easily extracted from a plant. There are very few side effects. You could actually grow it in your backyard and extract the oil in your kitchen. This plant byproduct has helped some people with epilepsy go from 300 seizures a week to one a week. You may be thinking, well why not do it?
I would but marijuana is illegal.
Now before you accuse me of being a pothead, let me explain. I grew up in a great home; straight laced, loving, Protestant Christian home. I listened to all the anti-drug presentations in school. We don't, to this day, drink alcohol or partake in recreational drugs. I use to be of the mind set that MaryJane was a drug that had no purpose other than to get high. I was wrong.
There are two main chemical compounds in marijuana: THC, the stuff that makes you high, and CBD, the part that is sought after for medicine.
It gets worse than that. The federal government, the Department of Health and Human Services to be exact, holds a registered patent with the U.S. Patent Office for CBD oil. In that patent you can read all the health benefits HHS believes CBD offers. So while the DEA curses it, HHS lauds it.
I may not like what some people do with marijuana but does that mean no one should have access to it? I doubt that even those, like myself, that staunchly abstain from drinking alcohol, would say you should not drink cough syrup or use rubbing alcohol. How many times have you heard someone joke about drinking grandma's homemade cough syrup made from moonshine and honey?
What makes this even worse is that the varieties of marijuana that are being used to produce the CBD oil are so low in THC, the psychoactive part of the plant, that it could be classified as hemp (which is illegal in more states than marijuana). One particular variety is called Charlotte's Web, which is named after a little girl who was having 300 seizures a week and now only has one. It has the highest levels of CBD recorded to date and is produced by a group called Realm of Caring located in Colorado. It is so low in THC that no one wants it except medical patients.
But the nonsense of our drug policy is so bad that the family that is growing Charlotte's Web moved their growing operation to Uruguay where it's legal. They then plan to ship it back to the states where it will reenter as hemp (which is legal to import but not grow).
I hear people say that medical marijuana is only a work around so people can get high. I use to believe that myself. Now, I think that is the furthest thing from the truth. Sure, there will be some that fake illness or injury to get access to the drug, but we have that now with drugs far more powerful and damaging.
Meanwhile, my daughter takes drugs daily that affect her ability to learn, cause fits of rage, blindness, irritability, and one can even causes her hair to fall out (imagine a nearly teenage girl with her hair falling out). As she gets older these drugs will have to change and become more powerful. All this because we have allowed politicians to scare us into supporting the drug war.
I would be happy if we could just legalize medical marijuana. I truly believe things would be better, though, if we legalized it out right. At least then I could grow it in my backyard and cheaply extract the oil for my daughter. Maybe then I wouldn't have to watch the clock as my daughter seizes counting down until I have to knock her out with a powerful narcotic.
The ten-minute mark passed that day as I stood in the kitchen. We have passed the ten-minute mark several times. We have had to call the paramedics before as well because we could not get them to stop. I wish she didn't have to go through this. No child should have to.
I pulled out the box that contains the diastat that will stop the seizure. Inside sat the syringe that holds a gel-like substance. We had no choice but to give it to her and the effects were almost instant. Her hands began to relax, the twitching in her eyes slowed and within moments she drifted off to sleep. Outside the boys were playing in the yard oblivious to what was happening. Lacie's day was over, however. Ended by epilepsy and strong narcotics.
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I'm including this video which goes into more detail about the medical use for CBD extracted from pot. One lady that was suffering from Crohn's disease and was completely cured while taking CBD oil. Please take the time to watch it.
Also, here is a link to a child here in Virginia with Dravet syndrome. On this site there are links to research around medical marijuana. http://www.haleyismyhero.com/medicalcannabis.htm
Question: What would you do if it was your child? How many seizures would be acceptable for you?
Bonus Trivia question: Nearly every human consumes substantial amounts of cannabidiol (CBD) during their life. What is the source of the CBD?