Cannabis Oil and Infantile Spasms: The Alluring Case of Maddie Gorman
This case is a particularly bittersweet one. Our patient has had the misfortune of dealing with not just one deadly disease, but two. It involves a child who has survived acute lymphoblastic leukaemia (ALL) with over one year of chemotherapy only to develop Infantile Spasms (IS), a devastating disease.
IS can develop from chemotherapy if it causes significant inflammatory changes in the child’s brain. It is also a permanent condition if it occurs. This disease can be as threatening as ALL. It can leave the child brain damaged or worse; some children die from this disorder. The name, infantile spasms doesn’t do the disease justice, it sounds too benign. IS occurs in many seizure disorders that affect children.
Technically speaking, Maddie has Lennox-Gastaut Syndrome (LGS), a severe form of epilepsy that strikes about 26 in 100,000 kids a year. It has been shown that up to 30% of children who develop LGS have a history of infantile spasms. A review of published studies found that 20% of children with LGS had infantile spasms when they were younger.
From the Epilepsy Foundation’s website:
- Lennox-Gastaut Syndrome (LGS) designates a type of epilepsy with multiple different types of seizures.
- Intellectual development is usually, but not always, impaired.
- In about a quarter of children, no cause can be identified.
- Seizures usually don’t respond to seizure medications.
- Accounts for only 2 to 5 percent of childhood epilepsies.
- Usually LGS persists through childhood and adolescence to adult years.
How do you treat LGS?
Treatment is difficult, because the seizures often don’t respond to seizure medications or AEDs. The intellectual changes do not respond to any currently available medicine or treatment either.
Partial relief of seizures, and also falls and injuries from seizures, may be obtained by valproic acid, lamotrigine, topiramate, felbamate, clonazepam, rufinamide, clobazam and occasionally other medications.
Rescue therapies, or treatments that can be given to help stop or shorten clusters or seizures is an important part of seizure care for people with LGS.
Stimulation of the vagus nerve in the neck, with an implanted pacemaker (VNS Therapy) sometimes improves seizures in people with LGS.
Dietary therapies have also been very helpful in some people.
An operation to separate the two halves of the brain, called corpus callosum surgery, may reduce seizures and injuries, but obviously is a big undertaking.
In Maddie’s case, she was having over 100 seizures per day—every day. This takes a monstrous toll on the patient. Due to the seizures, she regressed to where she had difficulty walking and talking. At age five she had the developmental equivalent of a 2-year-old. It’s very common to develop brain damage when suffering an episode of “status epilepticus.”
Status epilepticus is a term used to describe a seizure which cannot be stopped using conventional pharmaceutical treatments. It’s during these episodes that the brain can be deprived of oxygen which can cause brain damage. These seizures can be so dangerous and difficult to treat that the last resort is to put the child under general anaesthesia to stop the seizure activity. Maddie’s parents have tried nearly every drug available in the pharmacopoeia, over 12 different medications in all, to little avail.
Here’s more of Maddie’s background information:
Madeline Gorman was born November 30, 2006. On October 29, 2007 we received the news that a blood test had shown some very weird results and by the next day, it appeared that she had leukaemia. We moved from Jacksonville, NC to Charlotte NC for treatment and she has been receiving chemotherapy since having her Port inserted November 2, 2007.
Not long after her second birthday, Maddie began to have weird eye rolling episodes which seemed like seizure activity. About a month later, full myoclonic seizures began and our amazing little girl was diagnosed with Infantile Spasms. Since then, we have tried numerous medications to control the seizures to no avail. At this time (may 2009) she is having seizures throughout the day and night every day…The current theory is that some of her chemotherapy caused brain damage and that damage brought on the IS.
THE SURGICAL OPTION
After four and a half years of relentless seizure activity from age two onward, and numerous failed medications, they became more and more desperate. Finally, they agreed to have Maddie undergo a neurosurgical procedure which separates the communication between the brain’s two hemispheres; called the corpus callosum—it is literally cut in half (see figure one).
The idea is to prevent seizures from generalizing i.e., from spreading across one lobe to the other thus decreasing the severity. Initially, the surgery worked and the family had a moments reprieve. Only to find a resurgence of seizures three months later.
Despite using every drug available in multiple combinations, and having a risky brain operation performed, nothing permanently stopped the seizures day in and day out. They were right back where they started and no better off.
They had one option left.
BECOMING A MEDICAL MARIJUANA REFUGEE
Towards the end of 2014, Maddie’s family made a desperate decision. It would change their lives forever. The family moved to Colorado to try a new medicine with very promising results. The difficulty is that this new item is a Schedule I drug available in select states only. As a medical refugee they can obtain a medical marijuana card and legally use cannabis in Colorado. Colorado is seeing an explosion in medical tourism and refugees from all over the country.
One of the reasons they come to Colorado is for high-CBD cannabis oil. It’s a full-spectrum cannabis oil prepared using the high-CBD varietal called Charlotte’s Web. This preparation is still considered illegal since it is a whole cannabis, not hemp, extract. However, it contains a very small amount of THC compared to other therapeutic canna-oils. Its remarkable qualities stem from its high CBD content which is particularly efficacious in treating refractory childhood epilepsy. The same type of disease Maddie suffers from.
In her case it worked like a charm. Some studies suggest a 50% reduction in seizures can be expected using high-CBD oils. Here the results were even more impressive; it’s closer to a 98% reduction in seizure activity!
Dozens of children with intractable epilepsy have dramatically improved on cannabis oil — including Maddie, who takes one drop in the morning and one at dinner and now suffers just a few seizures a day rather than 100. “This treatment,” says Liz, “has been the biggest blessing of our lives.”
Maddie’s mother Liz mentions that they procured their first two-month supply of Charlotte’s Web for $100 US. The bottle of oil contains 2,000 milligrams of CBD. That comes out to 33 mg per day. The earlier referenced study used 25 mg/kg or 875 mg in a 35 kg child.
I mention this because Maddie was getting relief using a fraction (less than 4%) of the study dose. It comes down to economics. If such a small dose works this well, perhaps we don’t need to dose high. This minuscule quantity is a godsend for many financially strapped families.
A CHANGED LITTLE GIRL
Five days after Maddie started on Charlotte’s Web, her seizures seemed shorter and less intense — though Liz refused to get her hopes up. But after a month, when Maddie was consistently having far fewer seizures, Liz finally let herself feel an emotion she’d thought she’d banished forever: hope. “I can’t describe the feeling. Relief, wonder, joy. I had a sense of possibilities again. We actually started talking about having another child.”
Soon, Maddie started making developmental strides, learning her colours and letters and how to turn the pages of a book and hold a crayon. She seemed happier — looking at books, trying to express herself.
Liz, Maddie’s mother, tells us that even in Colorado, many neurologists still do not approve of CBD in treating refractory seizure disorders. Liz says, “Ours is supportive now, but she took some convincing.”
Through Liz’s efforts, North Carolina now has a law that allows the legal use of CBD oil to treat seizure disorders.
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