According to a story from edinburghnews.com, mother Karen Gray is about to seek access to cannabidiol oil for her five-year-old son, Murray, who has a rare type of epilepsy, Myoclonic Astatic Epilepsy (MAE), which inflicts many seizures on a daily basis. Karen has been relentlessly pursuing the NHS to allow her son to receive a cannabidiol supply for the condition, but she says that her progress in this endeavor has stalled.
In efforts to get approval, Karen has launched a petition and a Facebook page in support of her son. While Karen wants to do things as legally as possible, she feels that she is now out of options for her son. Murray experiences up to 12 big seizures a day, as well as 50 myoclonic and absence seizures an hour. He’s in a wheelchair, since he constantly falls down. He has had to miss weeks of school because of his seizure episodes, and it is becoming increasingly difficult to take care of him with his current treatments.
“The more medication (higher dose) he gets, the worse he seems to become. The consultants are doing their best to help but it’s a very hard syndrome to treat. It is drug resistant/ intractable epilepsy,” his mother explains.
Karen’s decision to seek out the substance herself came after she talked with other parents of children with epilepsy and other seizure-causing illnesses. From what they said, getting cannabidiol as soon as possible seemed worthwhile.
Since her efforts to pursue NHS approval are going nowhere, Karen feels as if she has no other choice if she wants to really help Murray. Karen and Murray are not the only epilepsy patients who have been trying to get cannabidiol approved for medical use. Karen is in contact with another mother in Bradford dealing with the same syndrome, who is in the same position with her son.
Still, Karen has some misgivings about having to pursue cannabidiol oil herself, and is worried about having to rely on private suppliers. Other issues that complicate the situation include that, without official guidance, Karen is unsure how to dose the treatment. Without access to legal research and treatment, she doesn’t know if the oil could have a bad interaction with the other medications that Murray is using.
Karen believes that cannabidiol could eventually get approved, but she estimates that the process could take a year or possibly longer, and her son needs help as soon as possible. Cannabidiol has been an effective remedy for seizures for a variety of conditions such as infantile spasms, tuberous sclerosis, and Dravet syndrome. It’s frustrating to know that cannabidiol is a successful treatment for rare forms of epilepsy, and yet it is still kept out of reach from the families who could benefit from it. Karen points out that cannabidiol helps with other conditions as well, such as Parkinson’s, anxiety, multiple sclerosis, and cancer.
“Medical cannabis DOES work, therefore the government need to help our children,” she explains.
Doctors have told Karen to start Murray on a high-fat, ketogenic diet. However, Karen worries– Murray’s appetite has already been affected by steroids, which have caused him to become overweight. The new diet could make this even worse. For Karen, obtaining the cannabidiol oil is the only viable option.
If you would like to sign the petition, you can do so here.