Another Texas Child In Need of Cannabis – Alexis’s Story

As told by Dean Bortell

Alexis#1Alexis 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’s 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, TX 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 2 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. Alexis#3We 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% 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.

Alexis#2No 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% 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 that kills over 50,000 people a year.

I am asking, indeed begging, for your help in getting this medicine for my baby girl.Alexis#4

 

DISCLAIMER This content is not intended to diagnose or treat any disease, or as a substitute for medical advice. Please consult with your advising physician before for starting any treatment for a medical condition. Home Food Heals shall not be held liable or responsible for any misunderstanding or misuse of the information contained on this site or for any loss, damage, or injury caused or alleged to be caused directly or indirectly by any treatment, action, or application of any food or food source discussed in this site. The statements made on this site have not been evaluated by the U.S. Food and Drug Administration. This information is not intended to diagnose, treat, cure, or prevent any disease.

5 Responses to “Another Texas Child In Need of Cannabis – Alexis’s Story”

Read below or add a comment...

  1. Mimi Miller says:

    Lexi, I have not met you or your family! Please know Mimi has been trying to get the medicine you need in Texas! Many know now what it is needed and we are doing the best we can so you do not have to leave your home, school, church, friends and extended family. We will do what ever we can to protect you and other children. I am so sorry that this has happened to you and your family. May The Lord be your guide on this Journey~

    Your family is very brave and strong and we appreciate all you are doing~~
    Changing the History in Texas~~

    • Dean Bortell says:

      Thank you so much Mimi. This is a fight we are committed to. We can’t quit because there are so many like Alexis out there needlessly suffering. Enough is enough……….

      • erika says:

        I would love to helpin any way i can, my son suffers from eoulepsy aswell having seizures from 3 to 25 an more through out the nigh. We are from laredo , Tx an here the hospitals dont know what to do anymore i dont have the money to go to Colorado to try the marijuana but i would love for the state of Texas to legalize it here for medical purpose as of right now i believe that this is our last hope. Please help us find a way.

        • Dean Bortell says:

          Erika,

          Feel free to contact me and above all get involved in the closest “NORML” chapter to you! Thanks. Dean

Trackbacks

  1. [...] is the story of now nine-year old DFW NORML member Alexis Bortell.  Her family is fighting to legalize Medical [...]



Leave A Comment...

*