Agoracom Blog

Medical marijuana gives epileptic child new lease on life

Posted by AGORACOM-JC at 4:26 PM on Monday, April 28th, 2014

AIRDRIE, Alta. ─ Potato chip producers and Grateful Dead fans have always believed, but a desperate mother in Airdrie, Alta., never thought she’d be calling marijuana a miracle.

The cries of “mama, mama” from Sarah Wilkinson’s living room just north of Calgary are all she needs to believe ─ that, and seeing her disabled eight-year-old daughter Mia going from 100 seizures a day to seven in the past eight months.

“Her first seizure was 29 minutes after birth ─ it was absolutely terrifying,” said Wilkinson.

“From there I was thrust into the world of seizure disorders. At first I thought it would resolve itself, and then the doctor sat us down and told us it was terminal.”

Mia was born with Ohtahara syndrome, an extremely rare epilepsy syndrome usually caused by a brain abnormality, and typically fatal within the first two years of life.

Children who survive longer, like Mia, are severely disabled.

Their parents can spend years in a desperate search, for something, anything, to reduce the number and severity of seizures, with the worst ─ called status seizures ─ lasting as long as 22 hours.

Last July, Wilkinson and her husband James had run out of options, and after seeing Mia in hospital ICU, fighting back from yet another brutal seizure and a medically-induced coma, they were ready to give up.

“Her neurologist had looked at me and said there’s nothing else we can do,” said Wilkinson.

“She’d had another status seizure and was in a medically-induced coma and my husband and I said this is it — I looked at him and said ‘I’m not doing this to her anymore, it’s not fair to her.'”

Having gone through dozens of drugs and procedures, Wilkinson said there was nowhere else to go, and to keep bringing Mia back from the brink seemed cruel, even if her life between the awful seizures often seemed happy.

“She laughs and plays with toys and she absolutely adores Lady Gaga,” said Wilkinson.

But worsening seizures and no further pharmaceutical options made the situation hopeless ─ all that was left was marijuana, an herb that has shown promise for other epileptic patients, but none so young.

Wilkinson didn’t really believe in marijuana as medicine ─ “I assumed people who wanted it just wanted to get high” ─ and before Mia’s breakthrough she only counted herself as an advocate for hockey and her two older sons: “I was a militant hockey mom, maybe.”

But with nothing to lose, she asked anyway.

“There was no way a doctor will prescribe medical marijuana for a pediatric patient, but we were ready to sign a ‘no resuscitation’ order and speak with a palliative team,” said Wilkinson.

“So I asked, because it was all that was left. The doctor said, ‘We are at the end of our pharmaceutical rope. Let’s do it.'”

Images of a child smoking bud are far from the truth: the pot is cooked to extract the medicinal agents, then mixed with coconut oil.

Just one day after Mia tasted her first marijuana, there were drastic changes.

“Within 24 hours her seizures stopped,” said Wilkinson. An electroencephalography test showed the herb had somehow calmed her raging brain.

“They said her EEG was comparable to someone with a benign form of epilepsy ─ that’s never happened before.”

The marijuana miracle is still a mystery.

Mia’s doctors want to know which of the roughly 500 compounds in cannabis is working, and why, but that would require an expensive DNA test to even get started — and because she was deemed terminal shortly after birth, public funding for a genetic breakdown has not been available.

“We need to find out why. It won’t change the course of treatment for Mia, but it can for hundreds of other children suffering from intractable seizure disorders,” wrote Wilkinson on a GoFundMe page dedicated to raising cash for that DNA test.

Meanwhile, Mia is happy at home ─ driving her mom nuts.

Unable to speak at all prior to the prescription for pot, Mia now has three words in her vocabulary, including “yes,” “no” and “mama,” plus she’s finally learning to walk.

“She started talking ─ I’m not really liking the ‘no,'” laughs Wilkinson.

“And ‘mama’ is all I hear anymore. I bawled when I first heard it.”

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