We started to explore marijuana, CBD, and THC for seizures when we heard about Charlotte’s story. Charlotte has Dravet syndrome, febrile, and afebrile status epilepticus. She was having 50 generalized tonic clonic seizures a day. She was also on 8 anticonvulsant medications.
Dravet Syndrome is a severe form of intractable epilepsy and it usually starts before the age of 1. Intractable means the seizures are not controlled by medication.
When Charlotte was 5 years old, she had significant cognitive and motor delays. She required a feeding tube and needed much more care. Charlotte’s family was desperately seeking help. They looked into the benefits of CBD.
They started to test a type of marijuana that was high in CBD and low in THC. Her parents began giving Charlotte low doses of plant extract and started to increase the dose over time.
- Month 3; >90% reduction in generalized tonic- clonic seizures and weaned from other AEDs.
- Month 20: 2-3 nocturnal generalized tonic clonic seizures per month and feeds and drinks by herself and autistic behaviors have improvement, walking and talking.
I attend the Epilepsy Education Conference at University of San Diego every year in July. People who attend are adults with epilepsy, parents of children with epilepsy, teens and seniors, caregivers, family members, medical professionals, teachers, school personnel and the community. You have the opportunity to attend educational sessions and learn about new brain research, emerging technologies, treatment options, medication and therapies on how to manage seizures.
What I like about this event is that I have more time to ask more questions about this seizure disorder. I also love meeting with others living with epilepsy so we can share our stories and struggles.
I’ve been volunteering with the Epilepsy Foundation of San Diego for 4 years since I was diagnosed. They have an amazing staff and an awesome support group. Every year, they host an event called Sharon’s Ride. It is a 15 mile bike ride (promoting helmet safety) and a 5k walk/run. I enjoy attending this event because it builds a strong epilepsy community and promotes epilepsy awareness. It also unites people living with epilepsy so they can share their stories.
About Sharon’s Ride
My favorite health quote:
“The doctor of the future will give no medicine, but will interest his patient in the care of the human frame, in diet and in the cause and prevention of disease.”
Has anyone heard about the “Ketogenic diet”, “Keto” or being in “Ketosis”? I’m sure many of you have, if not, I guarantee you will hear about it soon. I started researching the Keto diet or MAD (Modified Atkins diet) when I was diagnosed with seizures. I heard about the Keto diet when it was used in the 1920s to help reduce or stop seizures for children. Especially for children who were drug resistant with anticonvulsant drugs. That is how I first learned about the Keto.
Now, the interest in the Keto diet is at an all time high! I’ve learned that there are other significant healthy aspects about going Keto. Including weight loss, anti-aging, improving brain function, ADHD, Autism, Alzheimer’s and so much more. I like how some low carb, high fat supporters call it “The Big Fat Surprise”.
The media is blowing up about the Keto lifestyle. I’ve been hearing a lot about Keto benefits on podcasts, books and social media. So, what is Keto? It is a low carb diet, where the body produces ketones in the liver to be used as energy. It’s referred to as many different names – Ketogenic diet, low carb diet, low carb and high fat (LCHF), etc. Going on the Keto diet adapts your body to produce ketones in the liver to be used as energy. Eating high carbs, your body will produce glucose and insulin. Apparently, your body doesn’t give you good energy on glucose. Eat fat and burn fat! I understand that when I read the information about Keto, it is very overwhelming.
Is it me or does the Health Care System just suck? I think we could all agree that it is very complicated. I mean, I don’t get it. My life right now is waiting on prior authorizations, managing claims and expenses. Basically, I have to deal with all the annoying tasks. My risk of having a seizure increases because my medications is dependent on approval of Health Insurance. If I miss my medications, a seizure can happen. Why is it so hard to get these damn medications? It’s not like they are Oxycodone.
Stress is one of my triggers, I am stressed because of health insurance because I’m anxious on waiting for them to approve the medications! So I have the stress of stressing and that can provoke a seizure! Nah, I can’t blame all my seizures on my insurance, but it is literally a pain. I mean I am having LIFE threatening seizures and I’m waiting on them to give me my medications. It really feels like I am bugging CVS all the time and I’m the inconvenience. It feels like I am screaming to myself, “Please, Please, I don’t want to have a seizure, I need my meds!” I seriously do that? CVS hates me.