cbd oil for seizuresDecember 15, 2021
And it’s all thanks, the Pearsons say, to cannabis.
Morris Denton, CEO of Compassionate Cultivation, which provides the CBD oil used by the Pearson family, has launched a discount program with the Epilepsy Foundation Texas to help subsidize CBD oil costs for low-income Texans. So far, the program has served 12 of its approximate 300 customers.
Meanwhile, doctors have been slow to sign up for the program as they navigate the new law. As of late June, just 42 physicians across Texas were registered with the state to become CBD oil prescribers, including 12 in Harris County, though not all are prescribing CBD oil at this point. According to the Epilepsy Foundation of Texas, approximately 149,000 Texans have been diagnosed with the form of epilepsy that would make them eligible for the program.
“It’s kind of risky, but these parents and families are desperate for their kids,” said Gretchen Von Allmen, M.D., chief of pediatric epilepsy with McGovern Medical School at UTHealth and a pediatric neurologist at Memorial Hermann-TMC.
But this spring, Trysten’s luck finally turned, thanks to a treatment that has become available to him and thousands of other epilepsy patients across the state.
Texas patients must get two doctors to approve their use of CBD oil. And they are only eligible for a prescription if they have what’s called “intractable” epilepsy—meaning at least two other medications have failed to help them. Harris said she wouldn’t even call Texas’ policy a “medical marijuana” law.
“Most people are looking for anything beneficial to prevent their kids from having seizures,” Watkins said.
Meanwhile, the Texas law doesn’t permit people with any diagnosis besides intractable epilepsy to use CBD oil, even though some other states allow those with multiple sclerosis, late-stage cancer, Crohn’s disease and other conditions to access CBD oil or medical marijuana. That has frustrated some patients and advocates, but skeptics say more research must be done to evaluate whether and how CBD oil can treat those illnesses.
Doctors, patients and advocates are quick to point out CBD oil isn’t a miracle cure. It doesn’t eradicate epilepsy and it doesn’t help everyone. But for some patients, it can help eliminate or reduce their symptoms, and it may allow them to ease off of other drugs that have serious side effects, including anemia, low platelet levels, liver failure, pancreatitis, allergic reactions and suicidal tendencies.
In June 2015, Gov. Greg Abbott signed into law the Texas Compassionate Use Act after it passed both chambers of the state legislature by wide, bipartisan margins. But it wasn’t until late 2017 that the state issued full licenses to the only three businesses in Texas that can now legally provide CBD oil to prescribed patients.
Before the Texas law took effect, many patients were trying CBD oil on their own by visiting other states or ordering it online, which is a legal gray area. The problem with that, doctors say, is it’s difficult to determine the precise potency of the drug the patient is receiving.
Across Texas, doctors and patients are now finally able to take advantage of a three-year-old law that makes cannabidiol oil, or CBD oil, available to some epilepsy patients. CBD oil is derived from the cannabis plant, also known as marijuana. CBD oil provides symptom relief without intoxicating effects.
They were astounded by how quickly, and how well, the treatment worked.
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Perhaps the biggest hurdle of all is price. The Pearsons pay $350 per month for Trysten’s CBD oil—a typical amount—and the cost isn’t covered by insurance. That’s unlikely to change, experts say, as long as the federal government views cannabis as a Schedule I drug with no accepted medical use. In May, a federal appeals court sided with the Drug Enforcement Administration, ruling that CBD oil is a Schedule I controlled substance. But in June, the U.S. Food and Drug Administration approved Epidiolex, a CBD oral solution to treat seizures associated with rare and severe forms of epilepsy.
Teachers told Shena that Trysten was less distracted at school and that his performance had improved. In his first 30 days on his new treatment, he had just one seizure. He hasn’t felt this well for the past three years.
“I really wanted this medicine to work because of how many times pills have failed me,” said Trysten, who takes drops of the oil orally. “Once I started taking it, I felt so much better. I don’t have seizures.”
Under the state’s compassionate use law, patients’ medicine must contain at least 10 percent CBD oil and no more than 0.5 percent THC. For context, recreational marijuana might measure 20 percent THC. Those restrictions ensure Texas CBD oil makers maximize the compounds that provide symptom relief while minimizing those that can cause side effects or a high (Trysten Pearson, for his part, said he experiences no side effects from CBD oil).
The BPNA states that the current best evidence for medicinal cannabis is CBD, a highly purified liquid, which has been licensed in the US by the Food and Drug Administration and is currently going through the application process for a licence from the European Medicines Agency.
On 1 November 2018, the Government's landmark decision to reschedule some cannabis based products for medicinal use, came into force. The change in law means that specialist doctors in the UK can now prescribe medicinal cannabis to people with a limited number of conditions, including epilepsy. Here we explain what the change in law means for people with epilepsy.
The body also has concerns about the ‘viability of the economic model’ used by GW Pharma, the company that developed the drug, to establish the cost to be charged to the NHS for it. It concluded that Epidyolex would not, at this stage, be an effective use of NHS resources.
Dosing data for adults is currently very limited, although more information is expected shortly.
In August 2019, NICE – the National Institute of Health and Clinical Excellence – announced that it would not be recommending that cannabidiol, a medicinal cannabis in the form of Epidyolex, should be prescribed on the NHS for children with two severe forms of epilepsy. This is on account of the fact that its long-term effect remains unclear.
Guidance from the British Paediatric Neurology Association (BPNA)
There is also a wide range of other cannabis products available on the internet and in some commercial outlets such as health food outlets and from cannabis ‘dispensaries’ internationally. These products are of unknown quality and contain CBD and THC in varying quantities and proportions.
While some studies have also suggested that THC may have an anti-epileptic effect, animal studies suggest it can also trigger seizures. There is no evidence from randomised controlled clinical trials for products with higher proportions of THC (more than 0.2 per cent).
Three double blind randomised controlled trials of pure CBD in children and young people with these syndromes has shown a greater reduction in monthly seizures compared to placebos. There was also a greater reduction in drop seizures in people taking CBD compared to those on a placebo. Further open label studies have shown that it may also have an anti-epileptic effect in the epilepsies in general.
There is also no good scientific evidence to support suggestions that the addition of THC in combination with CBD increases the efficacy of cannabis-based medicinal products for children.
CBD is not psychoactive and it is thought to be responsible for many of the medical benefits associated with cannabis.
“Clinicians should not feel under pressure to prescribe cannabis-based medicinal products until they have undergone proper clinical trials,” says the BPNA.
Cannabis-based medicinal products can only be prescribed by a specialist. A GP cannot prescribe the medication but could refer you to a specialist.
The specialist will discuss all other treatment options with you first before considering a cannabis-based product.
The British Paediatric Neurology Association (BPNA) has drawn up interim guidance around epilepsy on behalf of NHS England.
What is cannabis?
The reason that the BPNA is only recommending CBD is that there is some evidence to show that this newly developed drug can be effective in reducing some type of seizures in Dravet and Lennox Gastaut syndromes.
The BPNA also recommends that where children are already taking other cannabis-based products that contain higher proportions of THC, they should be transitioned on to CBD until strong evidence for these products can be produced through clinical trials.
Although the label Lennox-Gastaut is often broadly attached to severe epilepsies with compatible seizure types and intellectual disabilities, it is important that there is a clear syndromic diagnosis.
Cannabis is made up of hundreds of different components. The most well known are two cannabinoids: CBD – cannabidiol – and THC – tetrahydrocannabinol. These are found naturally in the resin of the cannabis plant.
The BPNA guidance states that non-licensed medicinal cannabis should only be considered for children who:
“Is or contains cannabis, cannabis resin, cannabinol or a cannabinol derivative; is produced for medicinal use in humans and is a medicinal product, or a substance or preparation for use as an ingredient of, or in the production of an ingredient of, a medicinal product”.
Guidance around prescribing cannabis-based products.
The recommended guidelines are still only draft and the consultation closes on 16 September. So there is still time for you to have your say and let them know what you think. Professor Sander will be doing the same. All comments received will be considered by NICE and final guidance is likely to be published in November 2019.
CBD does not contain any significant amount of THC, the component of cannabis associated with producing a ‘high’.
People always have the option of seeking a second opinion.
The Government has no plans to legalise the use of cannabis for recreational purposes. Possession of cannabis is illegal. This includes cannabis for medical use unless it has been prescribed for you.
Guidance for other conditions is being drawn up the Royal College of Physicians with the Royal College of Radiologists (RCR) and the Faculty of Pain Medicine of the Royal College of Anaesthetists.
THC is the psychoactive compound in cannabis. It is responsible for the “high” people feel. The legal limit of THC content in a product, as stipulated by the Home Office, is 0.2%.
A prescription for medicinal cannabis would only be given when all other treatment options have been tried or are considered unsuitable, and would only be given if the doctor considers it to be in your best interests.