March is Epilepsy Awareness Month, and March 26, 2017 is Purple Day, where people around the world help to increase awareness of this disease. Please show your support on the 26th by proudly wearing purple.
“He was in my arms and he was babbling, and all of a sudden he stared at me funny, and his arms stopped moving. He looked terrified. I didn’t know what to do. He was awake, and aware.”
Shelagh, Preston’s Mother
That was Preston’s first seizure. The first of many he would experience in a life that ended far too soon.
Preston’s parents, Shelagh and Justin, don’t want his story to be a sad one, because that’s not how they remember their youngest child. They remember a happy little boy who made them happy, who brought their family together and in his passing gave them the drive to work towards change that could help other families. So while this story certainly has its share of sadness, we hope that you too will see the moments of joy and triumph, and use those moments to inspire you to persevere through your own low points.
Like most families Shelagh, Justin and their other children doted on Preston, enjoying their time with the cheerful infant. But as time went on Shelagh and Justin became concerned that he was showing some movements and behaviors that concerned them, and hadn’t been hitting his milestones. At fifteen months old an electroencephalogram (EEG) showed continuous activity in Preston’s brain.
An EEG is a measurement of brain activity, seen as waves. Everything that a person does causes waves on an EEG, that can be interpreted by a specialist. Epileptic seizures are caused by disturbed brain activity, shown by sudden changes or interrupted brain wave on an EEG. Preston’s EEG wasn’t a seizure, but it wasn’t normal either.
Preston’s physicians were concerned that he might develop epilepsy, and suggested that he start taking anti-epileptic medications. Concerned about potential side-effects, his parents declined, and opted to do some research into alternative options.
Like so many others before her, Shelagh had a pre-conceived notion of cannabis as a party drug. When she started researching alternative treatments for her son, she was shocked at what she found.
“I knew it was a drug, possibly a gateway drug for young kids. I had no idea it was being used for medicine at all until I had kids. When I started looking into epilepsy and seizure treatment, that's when I got bombarded with information on cannabis as a medical treatment.”
After doing a considerable amount of research, Shelagh and Justin thought medical cannabis would be an ideal treatment option for Preston, particularly due to the minimal side effects it exhibited. Preston’s medical team did not agree and wanted to explore all the other proven, conventional treatments first.
A challenge that physicians face in utilizing medical cannabis for seizure control is the lack of research supporting it as a treatment. As Shelagh discovered there is a considerable amount of anecdotal evidence showing the effectiveness of medical cannabis to treat seizures in children, but very little actual medical research – double blind, peer reviewed clinical trials that examine all the short and long term effects of treatment. It’s that lack of concrete evidence that makes it difficult for medical professionals to use medical cannabis as a first line treatment – they can’t risk causing more harm with an unproven treatment. While there is a considerable amount of research going on now, the data is still coming in.
Shelagh and Justin were unwilling to try the anti-epileptic medications, and the physicians were unwilling to prescribe medical cannabis. They were at an impasse, and decided to consider other options. Unfortunately time wasn’t on their side, and it wasn’t long before Preston had his first seizure.
Shelagh remembers the moment vividly, holding onto Preston, seeing the confusion and terror in his eyes as he lay there, unable to move.
“There's a saying, "Watching a loved one seize is the longest thirty seconds you'll ever experience in your life." And it's true. 30 seconds seems like a lifetime when you see that happen.”
“You don't understand what's happening and you don't understand the possible consequences to these episodes. Is there a chance of death? Is his heart going to stop? What is happening?”
As much as that experience shook them, Shelagh and Justin weren’t going to give up. Over the next few months they prepared to put Preston on a ketogenic diet, which can greatly reduce seizures in children. At the same time Preston was experiencing minor seizures with greater regularity, at least once or twice as day.
The day of his first keto appointment the family made the long drive the hospital to get the bloodwork done for Preston’s special diet. They had high hopes that it would help relieve Preston of his seizures, and knowing that a restricted diet was in his future they grabbed some fast food.
As they made the trip home Preston sat in the back, happily munching away on his fries as lights flickered into the car from the night outside. Then, triggered by the movement and the light, Preston seized again. It was a status epilepticus – where the length of the seizure or its proximity to other seizures, calls for medical intervention. But the intervention, Preston’s rescue medication, had no effect and he returned to the hospital he had just left.
Preston continued to seize for 40 hours, during which time his team of physicians tried everything they could to stabilize him. Medication after medication failed - nothing worked. Desperate to save him, the medical team put Preston into an induced coma. Finally, the seizures stopped.
Over the course of the next five weeks Preston was brought out of his coma, then had another status epilepticus – this time 36 hours – and was put into a second medically induced coma. Day and night Shelagh and Justin were with Preston, keeping him company, watching over him and hoping for the best. For them, each moment was a lifetime, and while they were in his presence, Preston himself was gone.
Throughout it all, the physicians did everything they could to help Preston. His EEG never seemed to reduce in activity, no matter what they tried. This eventually helped them to diagnose Preston with Lennox-Gastaut Syndrome (LGS).
Of the many different types of epilepsy, LGS typically affects young children, and is usually accompanied with developmental difficulties. One of the challenges with LGS is that seizures often don’t respond to medication, although there are other treatments that might reduce the number and severity of seizures, such as a surgery that separates the two halves of the brain.
Knowing now that he wasn’t going to respond to any other medications, Preston’s medical team brought him out of the second coma, fifteen days after he went in. Coming out of the coma Preston was rigid as board, he was unable to move, talk or eat. An MRI was done and it revealed that Preston’s brain had shrunk, he had severe brain damage.
On January 7th, forty-eight days after he had entered the hospital to prepare for his ketogenic diet, Preston was sent home, paralyzed. Even though his physicians had done their best, they could not help him with conventional treatments any more. Finally, he was given a prescription for medical cannabis.
Shelagh placed the first order as soon as they got home. Even though they had advocated from the beginning to try medical cannabis, Shelagh and Justin still had reservations – what parent wouldn’t? What if it didn’t work, what if it made things worse?
By that time Preston was seizing up to 17 times a day, he was emaciated, completely rigid and non-responsive – a shadow of the child they knew. They wanted Preston to find some relief and peace, to find some enjoyment in his life, so they administered his first dose of CanniMed 1:20 Cannabis Oil. And then they waited, and watched to see if another seizure would come.
“Every movement, we were like, is that a seizure?” Shelagh remembers. “Stop, get the watch! Wait, watch him, watch him, and nope, he just sneezed!”
They kept watching, and waiting, but no seizures came.
“We weren't 100% convinced for about a week and half. Finally, we realized, it's working. We were in awe, in shock.”
“After watching him seize, the way he had seized, for so long, it was hard to believe. To give him something the first day and have everything stop, it was like we were almost in a dream”
Bit by bit Preston began to improve. The family, already close, came together and found their rhythm, caring for Preston and each other, becoming more tightly knit than ever before.
From January to March Preston was seizure free. Under medical supervision he was slowly taken off his medications, and then his ketogenic diet, with no ill effects. His tendons loosened, letting his little body finally relax. Then he began to move again, raising his arms and legs. He started vocalizing for the first time in months. He doubled in weight, reaching a healthy size. Shelagh feels that with the help of the cannabis oil and his physiotherapy, Preston’s brain was repairing itself.
Then in April Preston’s eye began to twitch, for twenty hours. Concerned that it was a seizure Shelagh and Justin contacted the doctor that had prescribed the medical cannabis. The physician suggested that they increase Preston’s dosage to account for the weight he had gained. That did the trick.
To be safe they brought Preston back to the hospital, where once again they received devastating news. When Preston was in his coma it wasn’t just his brain that was damaged, his heart was as well. With the strain his enlarged heart was under, it began to fail.
Over the next three weeks Preston remained in the hospital under constant supervision. Shelagh and Justin continued to give him his oil, and he did not have another seizure. The medical team at the hospital was incredulous and even did a full 12-hour EEG on Preston.
“It was his very first clear EEG,” Shelagh says with a smile,” just as normal as yours or mine.”
“Something is working,” the doctor said when she saw the results. Shelagh agreed.
Even though Preston was seizure free, he was not well. His heart had failed and there was nothing that could be done for him, aside from indefinitely prolonging his life.
On May third, Shelagh and Justin took Preston home. Two hours later his poor tired heart finally gave out and, surrounded by those who loved him most, he passed away.
When you talk to Shelagh now she is resilient and can recount the entire journey seemingly with ease. She experienced the worst that a parent can, and survived. Because of what her family went through she is working to try and change legislation to make it easier to access medical cannabis for children with epilepsy. She saw firsthand the effect it had on her child, and wants to give other families a chance at relief, at happiness.
Shelagh smiles when she thinks of her youngest child, and what he meant to their family, “We call him our Godsend. He was our gift, and he brought us so close and made us realize what was really important in life.”