Two families uprooted their lives to seek out medicinal help for their young daughters’ seizures. In both situations, the families moved to Colorado to gain access to medical marijuana derivatives that helped the children involved deal with their seizures and lead a more normal life.
The first girl – 3-year-old Addyson Benton – has experienced chronic seizures since she was 9 months old. Doctors determined that she had severe intractable myoclonicepilepsy. The various medications prescribed by her doctors were not successful in addressing her condition. The toddler’s jerking, eye flutters and difficulties in achieving normal childhood milestones like talking were a result of her seizures, which numbered from 100 to 1,000 every day. That was when the family lived in Ohio.
Since moving to Colorado, and starting medical marijuana, the child has made tremendous strides. A doctor in Colorado prescribed an oil that is heavy in cannabidiol but low in tetrahydrocannabinol (THC – the ingredient that produces a high) that has shown great progress for the child. Addyson’s mom applies the oil twice a day through a patch on her daughter’s ankle.
Within weeks of their move, Addyson’s seizures dropped to less than 20 per day. So far this month, she has had between 3 and 16 daily. The family reports that the child’s eye flutters are gone and that she only jerks when trying to fall asleep. She is now walking with ease, talking and mimicking other people’s gestures and words.
In the second case – 9-year-old Alexis Bortell – had daily seizures that kept her from normal childhood activities. After a severe episode in February, the family decided to move from Texas to Colorado to see if medical marijuana would help their daughter.
Alexis’ prescription is a 15:1 blend of CBD oil and THC. The results for Alexis have been remarkable. She went from one seizure a day to one in the past month. She is now even riding a bicycle, an activity she could not do before.
The downside is that Alexis takes the oils orally twice a day. She complains about the taste and has to chase it down with juice.
Both girls see the same doctor now (Dr. Margaret Gedde) in Colorado. She has specialized in medical marijuana for about five years, and reports that two-thirds of her patients have come from other states.
Nearly half of the states in the U.S. have legalized some form of medical marijuana. However, cannabis is still a schedule 1 illegal substance, like heroin and ecstasy, on the federal level, according to the U.S. Drug Enforcement Agency. As Gedde noted, “We have this very strange situation where we have laws that are not based on medical or scientific fact.” They are also uneven across the country forcing families to make hard decisions like moving.
Tests that show the positive effect of medicinal marijuana derivatives on epileptics or others with seizures rarely involve children. As a result, critics raise questions of the long-term affect on brain development for these children. The flip side, however, is the long-term effect their seizures would have on their physical and psychological development without an effective medication.
Additionally, the families have to grapple with the ongoing financial hardship their situation causes. After uprouting their families, there is the ongoing cost of paying for the cannabis oils (about $160 according to the Bortells) which is not covered by insurance.
This week, the Texas legislature passed a bill that would permit cannabis oils for patients. However, the levels of THC permitted reportedly are not high enough for Alexis, so a return to Texas is not likely any time soon.
As more states legalize medical marijuana (in spite of the federal laws), there is hope that parents and patients will not have to read to fine print to figure out which state would allow the right prescriptive levels for their need. In the meantime, families with children who have disorders causing seizures that could potentially be helped by medical marijuana will have to weigh their options and consider moving to Colorado or other states that will allow their needs to be met.
By Dyanne Weiss
ABC News: Parents Say Pot Helped Young Daughter’s Seizures
Fox News: Ohio family who moved to Colorado finds relief for daughter’s seizures with medical marijuana
KGNS.TV: Medical marijuana changes life for Texas girl