The Enid News and Eagle, Enid, OK

ENE Xtra

January 18, 2014

Opening the Oklahoma door to medical cannabis

ENID, Okla. — Jenniafer Walters, president of the Epilepsy Association of Oklahoma, hopes to see Oklahoma legislators open the door for use of medical cannabis.

Her interest is both professional and personal. Her daughter, Nichole Walters, 22, has epilepsy. Nichole Walters was 11 months old when she had her first seizure, and three times her seizures have been severe enough she had to be put on life support.

Nichole’s physicians have implanted vagus nerve stimulators three times over the years. A device about the size of a pocket watch, it is implanted into the chest, much like a pacemaker, and wired to the brain. Although constantly interacting with Nichole’s brain, the VNS also performs a rescue by sending an electronic impulse to the brain to disrupt severe seizures. If the seizure persists long enough, someone must swipe a magnet over the VNS to fire the pulse.

“She was in fifth grade when she had to have the first one implanted,” Jenniafer Walters said.

Although the VNS has helped her daughter, Jenniafer Walters gives its use a mixed review.

“It’s not the amount of seizures she has, it’s that when she goes into a grand mal seizure, she does not come out of it,” Jenniafer Walters said.

She points out that seizures can be life threatening, and that the longer the seizure lasts, the more damaging it can be to the brain and body.

Mainstream drugs used to control seizures can have severe side effects, Jenniafer Walters said.

Children who have seizures face difficulty in school because of the learning challenges caused by the seizures. Additionally, medications used to ward off seizures themselves can cause learning disabilities, she said.

She hopes Oklahoma legislators will approve medical cannabis — not just for her daughter’s sake, but for other children.

“If we can have something that is a natural product that does not have bad side effects, it would be better,” Jenniafer Walters said.

Nhora and Dana Magill’s son, Nikko, 5, has Dravet syndrome. It is a catastrophic form of childhood epilepsy. The family has tried first one treatment, then another, for Nikko’s entire life. They’ve even had him on the ketogenic diet, a high-fat, low-carbohydrate diet used as a treatment of last resort for severe epilepsy.

As recently as November, Nikko was hospitalized on life support after a virus led to a downward spiral of worsening symptoms. His health always is precarious, and an everyday virus can trigger unexpected and devastating problems.

“They had to put him on paralyzing medicine,” Dana Magill said. “He was basically in a medically induced coma for three weeks. He’s already on a lot of seizure medicine.”

When the paralyzing medicine was taken away, things still were not good. Nikko had become addicted to it, Dana Magill said.

“I saw him go through withdrawals, they have him on methadone,” Nhora Magill said. “I see him shaking, trembling, sweating. It’s just so bad, I cry.”

The Magills also are interested in seeing cannabidiol approved for use in Oklahoma.

“One of my best friends has already moved to Colorado for this treatment,” Nhora Magill said.

The medicine is an oil tincture placed under the tongue of the child.

“It’s in our minds, too,” Nhora Magill said.

With Dana Magill owning an El Reno children’s furniture store, it would not be easy for the family to take Nikko to Colorado for the treatment.  Splitting into two households in different states is not an appealing option, with Nikko needing both his parents and the parents needing the support of one another. Nevertheless, Nikko’s needs must come first for the Magills.

“If we have to separate our family, we will,” Nhora Magill said.

 “If we could get the medical cannabis approved, if we can just hold his seizures to the same level, it would let us get him off the drugs with their side effects,” Dana Magill said.

Katie Dodson, 9, is another Oklahoma child with Dravet syndrome. “Katie was 6 months old when she had her first seizure,” said her mother, Kelly Dodson.

Katie has been on 17 epilepsy medications during her life, as many as five at one time. One medication, Stiripentol, is an “orphan drug” that has to be imported from France at a cost of $1,200 per month. The family’s insurance covers half.

Currently, Katie takes five prescriptions in as many as three doses per day, and deals with devastating side effects, Kelly Dodson said.

“We have to sign paperwork at the pharmacy that we know she is on adult levels of this medicine and that she could die at any time from liver and kidney failure,” Kelly Dodson said. “They are slowly destroying her organs.”

Katie’s physicians have even tried brain surgery, in which a piece of her brain the size of an orange was removed.

“There’s no other medications in this world that’s left for us to try,” Kelly Dodson said. “She’s extremely lethargic throughout the day and she suffers insomnia every night. She’s experienced weight gain. The most devastating is now she has a slack affect — she just doesn’t get really excited about things or overly happy.”

Dravet syndrome, and the treatments Katie has undergone because of it, have slowed the fourth-grader’s progress in school to the point she is developmentally disabled and an aide must be with her all the time.

“These children need to have access to this medication to try to save their lives,” Kelly Dodson said. “We don’t need marijuana that has to be smoked, we just need access to a prescription.”

Virginia Spencer, a mother of five and wife of an Air Force staff sergeant stationed at Tinker Air Force base, plans to move to Colorado Springs with her 9-year-old daughter, Avagrace, and perhaps a younger child as well.

That’s where friends get the cannabidiol treatment that is helping their child.

Avagrace has Dravet syndrome and began having seizures while still in utero. The first visible seizure happened so soon after birth that Avagrace still was in the hospital nursery. Physicians have tried 21 different drugs to control her seizures, sometimes in regimens of five prescriptions at a time and sometimes one solo.

“We need to move as soon as possible,” Virginia Spencer said. “Avagrace’s heart has stopped five times in the past year, which is not good at all. We are at this point in hospice, with a pacemaker for her heart, a gastrostomy tube and Medi-port, and other things that will make it easier for doctors to take care of her.”

The move will mean Virginia Spencer’s husband, Brendan Spencer, will not be able to be in the same house with Virginia and Avagrace because cannabidiol’s status as “illegal under federal law” could trigger Brendan Spencer’s arrest by military officials. Brendan Spencer cannot administer the medication to his daughter nor even be in the vicinity of it.

“Even though it’s legal in Colorado, he cannot administer the medicine because it’s illegal under federal law,” Virginia Spencer said. “Brendan will be very limited in his access to his wife and daughter because of this medicine. It’s either that or sit here at hospice and wait for her to die.”

The couple’s other children are Aidan, 11, Violet, 7, Breya, 6, and Liam, 5. Avagrace is 9, but her developmental age is 5 or 6, Virginia said.

“She’s regressing developmentally,” Virginia Spencer said. “She’s slowly losing language capabilities.”

Virginia Spencer said Avagrace at times has experienced more than 100 seizures a day. In November, Avagrace had 347 seizures over the span of two days. Sometimes her seizures last 10 to 15 minutes, then are followed by another seizure after as little as 15 minutes of rest.

Her most recent EEG showed that Avagrace’s brain has slowed down. That’s why her organs are slowing, Virginia Spencer said. Her heart is healthy but cannot handle the seizures. Avagrace now is progressing to other types of seizures as well.

“There are good days when she has a seizure, and can get up and get going right after the seizures, and then there are days when her heart has stopped,” Virginia Spencer said.

Virginia Spencer is raising money for the move to Colorado via a Facebook page, “Help Avacake make Epilepsy Crumble.”

Available treatment options for childhood seizure disorders simply are not adequate in Oklahoma, Jenniafer Walters said.

“A lot of times with doctors, if the medicine doesn’t work they want to cut,” Jenniafer Walters said. “When you go in and cut out a portion of the brain, you can’t put that back. And when you take away a portion of the brain, it affects the senses, smell, touch, taste. A lot of them, 10 or 15 years later, are having seizures from the scar tissue that has formed.”

“I tell parents all the time to keep a journal,” Jenniafer Walters said. “Document everything. If the eyes go to the left corner, that means the seizure is coming from the right side of the brain.”

Sudden death in epilepsy is becoming more frequent now, though the medical community just now is starting to talk about it, she said.

Walters said she wishes cannabidiol had been around when her own daughter was growing up.

“We use plant-based drugs daily,” Jenniafer Walters said. “Cannabidiol is not something you smoke, it’s a pill or an oil.”

If it helps people with epilepsy, it might help people with other conditions, Jenniafer Walters said.

“Why not research it?” she said. “If we could give people something that might have less side effects, that’s important too.”

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