Pubdate: Wed, 04 Mar 2015
Source: Similkameen Spotlight (CN BC)
Copyright: 2015 Similkameen Spotlight
Contact:  http://www.similkameenspotlight.com/
Details: http://www.mapinc.org/media/3484
Author: Andrea DeMeer

TODDLER FIGHTS BRAIN DAMAGE, AND THE LAW, FOR A CHANCE

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=C2=85I 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=C2=85.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 Cafe 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 www.medicalcannabisforsickkids.com .
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