The story of Alexis, her seizures, and medical marijuana
To see the video Alexis’ father made about her story, find it at the bottom of this article.
Alexis is my eight year old daughter who has ‘generalized epilepsy’, which essentially is a diagnosis for seizures of unknown origin.
Our story starts late one evening in July 2013 when my wife and I witnessed Alexis’ first seizure at our home in Rowlett, TX. It was devastating.
As disabled veterans, both my wife and I have seen some pretty horrible things, but nothing can prepare you for the sight of your little girl convulsing wildly and foaming at the mouth. I honestly thought she was dying.
Luckily we live right next to a hospital so she was in the hands of doctors within minutes.
She was admitted to the hospital where she continued to have seizures all through the night. After many days of extensive testing and a transfer to specialists in Children’s Memorial Hospital in Dallas we finally had our diagnosis; Epilepsy.
We were about to find out that our lives would never be the same as we were entering a world where medical science is not absolute.
We began medications immediately in mid-July 2013. The drug assigned was Carbatrol Extended Release 200mg tablets to be given twice a day. It was like throwing gasoline on a fire!
Her seizures went from occurring mostly at night to occurring at any time during the day. The frequency she was having them went from roughly two a day to 5-10 a day.
We pleaded with our neurologist for help and their answer was to increase the dosage. This change had catastrophic effects. It was now September 2013 and that meant school was in full swing. Alexis’s seizures once again increased from 5-10 a day to 10-20 a day, but something else changed too.
She was having two types of seizures. One was the kind we were used to, stiff as a board, convulsing, and violent facial tremors. The new one is called an absence seizure, which meant she totally ‘froze up’ for minutes at a time and would fall if not assisted.
The only relief was that her seizures returned to their very early and late evening schedules and she had few major issues at school. We were told to stay the course while her body adjusted to the medications and so we held on for about a month.
After a month of terror, we went back to our primary care provider for a second opinion. She immediately recommended a new neurologist whose first action was to put Alexis back in the hospital for monitoring. The results of these tests led to another change in medication. 250mg of Depakote twice a day and a return to the original dose of Carbatrol 200mg twice a day, a regimen we have remained on until last week.
As for the medication’s effectiveness, well that is a complicated answer. While we have seen a reduction in seizures of about 70 percent we have seen an increase in ‘tremors’ early in the morning and sore throats/leg spasms during the school day. This led to 74 nursing visits and 45 late arrivals this school year.
We have also seen drastic changes in Alexis’s personality. Every day at about the time of each medicating, she goes through periods of euphoria or depression. It is as if we have traded the problems of epilepsy for the problems of the drugs given to combat it. Either way, this quality of life is not satisfactory or sustainable.
No child should have to endure this torture when there is a safe alternative that could be life changing for Alexis. Medical cannabis has been studied since the 1970s in Israel for treating epilepsy with very good results. It is now being studied in Colorado and is showing the same positive results.
Even with the powerful and often dangerous drugs available to American physicians today, over 30 percent of patients find themselves in the same situation as Alexis where the drugs (and indeed the system) have failed.
Medical cannabis is another tool that should be available to physicians as they wage this war against a disease which kills over 50,000 people a year.
By: Dean Bortell, Alexis’ Father
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