Providing constant care for Remi leaves Ashley Aitchison no time for advocacy

Providing constant care for Remi leaves Ashley Aitchison no time for advocacy

Parents defy drug law to give son a chance at development

Remington Swanson has a rare condition that causes up to 200 brain-damaging seizures a day.

Baby Orajel, Children’s Tylenol, antibiotics for an ear infection, these are the medicines most parents of a toddler keep in the cupboard over the bathroom sink.

Ashley Aitchison and Clayton Swanson have something else – medical marijuana oil they are forced to obtain illegally as the only hope of bringing relief and a chance of development to their two-year-old son Remington.

It’s expensive, it involves subterfuge, and it’s frustrating.

Remington suffers from Myoclonic seizures, a severe form of epilepsy that can cause him up to 200 seizures a day.  Every seizure damages his brain and puts him at immediate risk of physical harm.

Medical marijuana was suggested by a pediatrician – who’d had other young patients respond to the treatment – after the family watched Remington deteriorate through 11 different pharmaceutical therapies.

“It’s so important to get rid of the seizures and absolutely no pharmaceutical drug was doing that. We had a list and we kept crossing them off, the things that didn’t work,” says Aitchison. “The side effects were just brutal.”

Remington was duly issued a license for medical marijuana use, however the law only allows for the drug to be inhaled. It prohibits its conversion to oil, which is the only form suitable for a young child.

“How is a two-year-old supposed to smoke a cigarette?”

Aitchison found a sympathetic and trained specialist who makes the oil in a safe environment.  It costs approximately $200 per month. The cannabis comes from an industrial hemp plant containing high levels of CBD and low levels of TCH.

“The oil that we are giving him has taken half of his seizures away so far.”

Since beginning the marijuana treatment – he gets a rice-grain sized drop in a spoonful of food four times a day – Remington has also made developmental strides.

“It’s been the best thing for us and for him. Now Remington sits all by himself, he does a military-type crawl now and he can pull himself up and stand against the couch. He’s playing with toys and he’s holding things better and he can look at them.

“He is way more focused and aware of things that are around him than before. He’s actually looking at me. Just to have your son look at you and smile is huge.”

Remington’s condition stems from a stroke he experienced at birth, although it went undiagnosed for seven months.

Aitchison – who also has an eight-year-old boy named Chaise – recalls growing increasingly anxious caring for her infant son. While he wasn’t having seizures at the time, he was a colicky baby who cried often.

“I knew there was something not right. He wasn’t sitting up, he never looked at things and he wasn’t grabbing…I just thought that maybe he was a little slower than others. I was almost kind of scared, that’s how I felt.”

At BC Children’s Hospital an MRI revealed the stroke and an EEG detected abnormal brain activity.

“That was a blow. I just couldn’t believe it.”

Remington’s seizures manifested initially as twitching behavior. Today a seizure looks more like an electric shock. “It’s like something pushes him right over. Boom he’s on the floor….Two hundred a day. That’s a lot. It’s pretty much every few minutes.”

Remington requires close, constant supervision and must be on a soft surface at all times. He cannot attend daycare and Aitchison cannot work outside the home.

She receives a provincial benefit of $230 a month to cover respite care. “That buys me four hours a week.”

With an easy laugh she adds: “That four hours goes pretty fast when you’re cleaning the house. You can’t clean the house with Remi around.”

Aitchison is a solo parent for most of the time as Remington’s father works in Fort St. John three weeks out of every month.

Reminton’s parents grew up and went to school in Princeton, moving north about three years ago. Today Aitchison lives in Penticton to be near Remington’s doctors, as well as physio and speech therapists.

Aitchison acknowledges the brain damage Remington has already incurred cannot be reversed, and that some children who suffer Myoclonic seizures eventually live their lives wheelchair-bound and immobile.

She has never asked a doctor to give Remington a prognosis.

“I have never really asked what they think because I don’t want to know. I don’t ever, ever want to give up on the idea that he will speak and walk one day. All I want to do is my best to make sure that we are doing the right things to help him develop.”

Anyone wishing to contribute to Remington’s medical expenses or care can donate at Round the Corner Café in Princeton. To donate on line to children in similar circumstances, learn more about Remington’s condition, or to help with the lobby for legalized medical marijuana oil, go to medicalcannabisforsickkids.com.

 

 

 

 

 

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