"We are so lucky, but we feel so bad for the other families in this terrible situation," she says.
"I'm not sleeping and my anxiety is through the roof."
Miss Deacon says there has been a "campaign of fear" against medical cannabis which has left doctors scared to prescribe it.
'Alfie goes months without seizures'
"It needs to be available to everyone. It will save the NHS millions of pounds a year by reducing the time children with severe epilepsy spend in hospital."
They were offered Epidoylex on the NHS, but did not want to risk giving it to Charlie after speaking to other families.
Ms Montgomery says the family flew to the Netherlands to obtain it from a Dutch doctor, using a private UK prescription, because the NHS refused to pay for it.
"He was violent and aggressive before and we had no quality of life.
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.
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.
What is cannabis?
Dosing data for adults is currently very limited, although more information is expected shortly.
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.
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.
In June 2018, the FDA approved Epidiolex allowing medical providers to prescribe this medication for Lennox-Gastaut and Dravet syndromes, similar to how they are able to prescribe other seizure medications. In late September 2018, the DEA rescheduled Epidiolex to Schedule V and all states and the District of Columbia have created pathways so that it can be brought to market for consumers. Read an FAQ to learn more.
In May 2019, the Transportation Security Administration (TSA) updated its guidelines on traveling with CBD products. When you fly, you can now carry on or pack in checked baggage products/medications that contain hemp-derived CBD (with less than 0.3% THC) or are approved by the FDA, such as Epidiolex.
A number of clinical trials are active and recruiting people, including studies using Epidiolex in people with Tuberous Sclerosis Complex and Sturge-Weber Syndrome.
What are the laws governing medical marijuana and cannabidiol?
The Journal of Child Neurology hosted a special report podcast about cannabis on March 6, 2017. In the report, Dr. Alison Christy interviews Dr. Jackie Gofshteyn, a resident in pediatric neurology at Children’s Hospital of Philadelphia, about her article, “Cannabidiol as a Potential Treatment for Febrile Infection-Related Epilepsy Syndrome (FIRES) in the Acute and Chronic Phases.” Dr. Christy also speaks with epilepsy.com’s medical cannabis editor, Dr. Anup Patel of Nationwide Children’s Hospital, about his article, “Medical Marijuana in Pediatric Neurological Disorders.” Margo Roemeling, a third year medical student at Oregon Health and Sciences University, shares the learning topic on the history and use of marijuana in the treatment of pediatric neurologic conditions.
Providers do not need a special license or certificate to prescribe Epidiolex. Epidiolex is the first and only plant-based treatment derived from cannabis for use as a treatment for seizures with FDA approval. Other formulations of medical cannabis have not been approved by the FDA.
On June 25, 2018, the U.S. Food & Drug Administration (FDA) approved EPIDIOLEX ® (cannabidiol, CBD) oral solution for the treatment of seizures associated with two epilepsy syndromes – Lennox-Gastaut syndrome and Dravet syndrome – in people two years of age or older. Epidiolex represents a new medication option for children with these types of epilepsy. It is also the first ever FDA approved medication to treat seizures in Dravet syndrome.
Hemp traditionally contains lower concentrations of THC and higher levels of CBD. Cannabinoids extracted from hemp plants, including CBD, have until recently been classified as marijuana and considered Schedule I substances. Per the DEA, Schedule I substances currently have no accepted medical use and have a high potential for abuse. A federal law* enacted in December 2018, however, reclassifies hemp and hemp-derived CBD as an agricultural commodity and exempts it from the list of Schedule I Drugs.