Our Only Option
My name is Katrina Barnes and my husband and I have a four year old son named Booker. Booker was born healthy and is absolutely the most wonderful thing that has ever happened to us as a family.
About a year ago, Booker started having seizures. We took him to doctors and hospitals to find out what was causing the seizures and, hopefully, what we could do to stop or at least reduce them and help Booker lead a typical life.
An EEG revealed that Booker had temporal lobe epilepsy. To treat his epilepsy the neurologists prescribed Oxcarbazepine (ox-car-baz-a-peen), which did not relieve the seizures. In fact, according to the diary that I kept, the seizures actually increased in frequency. The recommended course of action from our neurologist was more Oxcarbazepine -- leading to even more seizures. By this point, Booker would have days with up to ten seizures.
Then even more devastating news was delivered: An MRI showed that Booker had a tumor in the temporal lobe of his brain the size of my fist.
My husband and I, frustrated that the neurologist kept increasing dosage for a drug that was clearly making things worse for Booker, asked what the next steps were. Surgery was an option, but not until Booker's epilepsy was proven to be "intractable," meaning two medicines had to "fail" at the highest recommended dosages for a child his size.
A quick search on the internet showed us hundreds of parents in similar situations has chosen to use CBD oil and most were amazed at how well it worked. We spoke with our neurosurgeon, who stated, "my PhD study was on the stimulation of CBD receptors in epileptic rat brain cells. It very well could work. It won't hurt your son to try, and it certainly won't interfere with any of his current treatments, but I can't recommend it because of my hospital affiliation."
Nevertheless, we decided to give CBD a try. Immediately Booker's seizures were cut in half just by him taking two ml in the morning and two ml at night. We finally reached the maximum dose of Oxcarbazepine and started backing the dosages down, before eventually switching from Oxcarbazepine to Keppra.
The happy, sweet boy that we knew started to come back out of his haze. We also noticed, thanks to our diary, that Booker rarely had a seizure within four hours of his CBD dose. We started giving Booker 1/2 ml of CBD oil every 3 hours, and the seizures stopped entirely. Soon, we had a period of several months with zero seizures.
The reduction in seizures as a result of the medication and CBD oil have allowed our family life to return to relative normalcy, and Booker is now enrolled in half day school with other children his age, something that didn’t remotely seem possible last April.
Under Missouri's current CBD program, Booker does not qualify for CBD oil because he does not have intractable epilepsy. The Catch 22 here is that the CBD oil is what is keeping him from getting the diagnoses of intractable. We could stop giving him the CBD, let his seizures increase again, and increase the Keppra dosage to prove that he is intractable, but that seems like an unconscionable violation of our parental duties.
We have lobbied our legislators to expand the CBD program to include patients like Booker and thousands of others. Unfortunately, the Missouri General Assembly session ended on Friday, marking another year that the legislature has refused to extend legal access to this important medicine.
We can no longer wait for our elected officials to act, and that's why I urge you to support the New Approach Missouri medical cannabis initiative petition! The politicians in Jefferson City have made it absolutely clear that they will not protect patients, so it that leaves it up to us -- the people -- to change the laws ourselves.
You can shape Missouri history and give some of our most vulnerable residents a potentially lifesaving medical option by helping to pass this constitutional amendment. Support the campaign for medical cannabis in Missouri by contributing $10, $25, or $50 now! And if you have not yet signed the petition, go to the campaign website now and look for a signing location near you.
This initiative is the only way to bring relief to Missouri patients, and the time to act is now, so show your support for patients by contributing today!