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Posted: March 1, 2014 10:30 p.m.

Into the weeds

Searching for a seizure solution

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Abe and Mary Elizabeth Hopkins can barely move most of the time, their minds and bodies trapped by different disorders that frequently leave them listless and unable to react to the world around them.

Michala Hopkins can move herself from room to room, but she lost her leg to cancer when she was 14 months old; her frequent seizures make it too dangerous for her to have a prosthetic that would leave her more susceptible to hurting herself in a fall.

None of the children can communicate with words, even though Mary Elizabeth is nearly 21 years old and Michala is 16. Abe, 6, is trying to learn how to crawl, but his seizures are frequent and prolonged and his progress is constantly interrupted.

Michala had her first seizure when she was three weeks old, Mary Elizabeth’s first seizure came on day three and Abe didn’t even make it to day two before his first seizure.

“They all have seizures every single day,” mother Kelli Hopkins said last week. “The amount of number of medications we’ve been through to try to minimize, I won’t say control, their seizures has been crazy.”

All told, the three children are on 24 different types of medications, and they’ve tried numerous others throughout the years.

“And still, they have seizures daily. It affects their quality of life, from learning to sit up, to possibly standing up or being able to communicate with us” Kelli said.

“We have no idea what the seizures are preventing them from accomplishing, because daily they can be in the middle of something and a seizure will hit and they can be out of it for hours.”

Medical marijuana next option
Kelli and her husband, Mike, feel like they’ve tried everything.

One of the most common surgical procedures to stop seizures is to sever the two halves of the brain; however, Michala has Aicardi Syndrome, a rare condition that caused her brain to develop without the middle section that connects the brain’s left and right sides. So, her brain can’t be severed.

Another common treatment is a stimulator, similar to a pacemaker, that connects to the vagus nerve in the neck and sends weak electrical signals along the nerve to the brain at regular intervals to reduce frequent seizures, but Mike said his children have only experienced a reduction of 2 to 3 percent.

The stimulators can have much greater success, cutting seizures down by as much as 50-75 percent, but the anecdotal successes of medical marijuana compounds has been startling, with some children experiencing the total elimination of seizures.

The most high-profile case, the one spotlighted by Dr. Sanjay Gupta’s CNN documentary “Weed,” is that of Charlotte Figi, a young girl who has seen seizures drop from 300 a week to a couple per month, a 99.8 percent reduction, using an oil extracted from a special strain of marijuana.

Charlotte’s mother, Paige, testified about the successes of the oil, named Charlotte’s Web after her daughter, at a Feb. 10 hearing in front of the Health and Human Services Committee of the Georgia House of Representatives, which recently approved Rep. Allen Peake’s bill to bring clinical testing of products like that to Georgia. The next step is for the bill to go before a vote of the full house.

Paige Figi told the committee the strain of marijuana used to create the oil is low in tetrahydrocannabinol (THC), the compound in marijuana that is psychoactive and elicits a high, while being high in cannabidiol (CBD), which is evidenced to have medicinal properties without psychoactivity. It’s a drug with no appeal to people looking for a good time.

Kelli Hopkins has done the research, and she’s not expecting a miracle, but she wants another option and the hope that comes with it. She and Mike have thrown their public support behind the medical marijuana movement in Georgia – they, like other parents in the movement, are clear they don’t support the legalization of recreational marijuana.

Kelli said she’s knows some people because these medical marijuana products aren’t approved by the Food and Drug Administration, but some of the side effects of the myriad of medications the Hopkins’ children take are nearly as damaging as the seizures.

“You look at the side effects they list, and ask, ‘Why am I doing this? Why am I risking my child?’” Kelli said.
The family has even tried, and actively uses, medications that aren’t FDA-approved, seeking a solution. When Michala was only 3 months old, Mike and Kelli placed her in a medical trial in Alabama for a drug that had just been FDA-approved.

“Sixteen years ago, we were willing to risk that because we needed help,” Kelli said.

And they still need help.

Dr. James Smith, an emergency room doctor at Gwinnett Medical Center and member of the board of directors for the Medical Association of Georgia, testified at the Feb. 10 hearing that he believed the available research out there warranted allowing further study in Georgia. His own 7-year-old daughter suffers from a severe seizure disorder known as Doose Syndrome, and he’s been trying to get into clinical trials for Epidiolex, a marijuana extract oil produced by London-based GW Pharmaceuticals.

He told the committee about the side effects mentioned in one study about medical marijuana: drowsiness and fatigue. The side effects for some medications being used today: liver failure, destruction of bone marrow and Stephens-Johnson syndrome, in which skin cells die and slough off the body. All three side effects can lead to death.

Small steps
Eleven-year-old Marlee Anne Hopkins is the only sibling without a special-needs condition; she’s developed into a bright, compassionate girl who longs for the day she’ll be able to see her brother and sisters do even the most simple of tasks.

“Not the big things like playing sports, just getting to stand up. But I know that might be possible and I know that might not be possible, I just hope that it would be possible,” Marlee Anne said last week. “And they might be able to sit up and might get stronger, and Michala might get to have a prosthetic leg and might not be so much aggressive, because I know she means well but she doesn’t know how to show the love how a normal person would.”

Marlee Anne said she tries to be extra active to make up for the things her siblings can’t do, including sports and participating in activities that raise money for sick children.

“It’s hard sometimes when you see your friends who have siblings that they can do stuff together with, like playing in the snow,” Marlee Anne said. “One thing I’ve always dreamed about is Abe being able to crawl, and maybe Mary Elizabeth being stronger, not even fully sitting up, but just being somewhat stronger.”

For the second part of this story and to learn about the current bill in the Ga. House of Representatives, concerning medical marijuana, click here.

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