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Medical Marijuana For Toddler Inches Closer as Bill Passes

Scotch Plains residents continue fight to help daughter cope with frequent and violent seizures from rare form of epilepsy.

Two-year-old Vivian Wilson suffers frequent and violent seizures due to a rare form of epilepsy. Photo credit: Meghan Wilson
Two-year-old Vivian Wilson suffers frequent and violent seizures due to a rare form of epilepsy. Photo credit: Meghan Wilson
SCOTCH PLAINS, NJ -- Monday brought a huge victory for local residents Brian and Meghan Wilson: The medical marijuana bill inspired by their 2-year-old daughter Vivian was approved by the State Assembly, the final step before it reaches Gov. Chris Christie's desk. 

The Wilsons have made headlines for their fight to get their daughter a strain of marijuana that has shown success for children with Dravet syndrome, a rare form of epilepsy that causes Vivian to suffer frequent and violent seizures. 

The family was met with obstacles, including satisfying state requirements that a psychiatrist sign off on Vivian's treatment, but were eventually able to secure a prescription for Vivian in February, making her one of the youngest enrolled in the state's program.

Though Vivian's a card-carrying medical marijuana patient, the Wilsons aren't able to get the specific strain of marijuana they need due to a limitation that dispensaries sell no more than three strains of marijuana.

"The strain we need contains more CBD (short for cannabidiol), which is non-psychoactive, than THC, the other ingredient in marijuana," Meghan Wilson said. "CBD doesn't make you high. The strain is really rare and has to be bred a certain way, but its gaining popularity in states like Colorado and California."

Wilson said because New Jersey dispensaries can only sell three strains, it's unlikely they would chose to carry such a rare and non-psychoactive one. The other hurdle for the Wilsons is the law prohibits edible marijuana products, which is how many child patients receive the marijuana instead of smoking it.

After writing lawmakers for help with their plight, State Assemblywoman Linda Stender (D) and State Sen. Nicholas Scutari (D), sponsored a bill that would rectify all three of the Wilsons' obstacles by requiring only one prescribing physician and allowing the sale of edible products and unlimited strains of marijuana. On Monday, the bill passed the Assembly by a vote of 55-13-8.

"I feel like I just won lottery," Meghan Wilson told Patch Monday night. "I was not expecting 55 'yes' votes. But the reality is I can’t exhale until Christie signs it. We really need to target the state health commissioner and Governor Christie now and make sure he fully understands our situation."

When Christie was asked about the Wilsons last month during a press conference in Lavallette, he responded that he was "very concerned, if we go down this slope of allowing minors to use this, where it ends. So I'll have the health commissioner look at it, report back to me. But I don't want to mislead people, either. I'm not inclined to allow them to have it."

After Monday's vote, Assemblywoman Stender brought Meghan Wilson and another New Jersey Dravet mom (and registered nurse), Jennie Stormes, to Christie's office. The governor was unavailable, but sent an assistant to hear their stories.

"We spoke to her for about 10 minutes and she was very receptive," Meghan Wilson said. "We highlighted for her how the changes to the bill would positively benefit our children."

Stender said she took up the Wilsons' fight immediately after receiving their letter asking for help. 

"I called her after I read it because it was a heartbreaking story," Stender said. "I'm a mother of three and grandmother of five. We called the marijuana bill the Compassionate Care Act, and compassionate care to me in this instance means figuring out a way to not add extra hurdles for this child to get relief."

Meghan Wilson's excitement Monday night was stymied when she heard from her husband that Vivian had a seizure while she was at the statehouse.
 
The seizures are brought on by stress, external stimuli or even something as simple as a pattern in a fabric, and Vivian experiences "anywhere from 10 to hundreds" of smaller, myotonic seizures every day.

The Wilsons recently began giving Vivian a high-fat diet and having her wear an eye patch, which helps to lessen their frequency. But every 7 to 10 days, she has a full-body convulsive seizure where she loses consciousness, which can last from 20 minutes to more than an hour.

"They're horrifying," Meghan Wilson said, remembering the first time she saw Vivian seize at 2 months old. "If you saw my daughter seize for 45 minutes, an hour, stop breathing, you'd do anything to help her."

At Vivian's first birthday, she had her first taste of chocolate cake. Twenty minutes later, the excitement brought on a seizure that wouldn't stop. She spent seven days in the ICU.

"When it happens, we yell 'seizure,' and everyone has a job, including my 4-year-old, Adele," Meghan Wilson said. "She goes and gets a yoga mat to cushion her. I’ll grab the rescue drugs and my husband gets the oxygen."

Vivian's rescue medication is a benzodiazepine called midazolam, which is shot up her nose with a syringe during the seizure.

The Wilsons' goal is to see Vivian go two months and one day without a seizure, since from birth to two months old is the longest she's ever gone without one.

"After she had her first set of vaccinations, she had her first seizure and I took her to the hospital," Meghan Wilson said. "They told me she probably had a fever and said it would never happen again and it did two months later. She was given phenobarbital at 5 months old. That's the thing—the marijuana we are trying to get her won't make her high, it's these heavy barbiturates and benzos that do and they're legal. The seizures and meds are killing her brain cells and organs."

Coincidentally, Meghan Wilson works as a manager for clinical drug trials.

"I've worked on anti-epilepsy drugs and I'm not bashing pharmaceuticals, but Dravet is medication resistant," she said. "And even in the Dravet support groups, when people say they heard about a new drug, it's a little depressing to me. I know the process all to well to know there is nothing in the pipeline and even if there was, it isn't going to be FDA approved for 15 years."

They've tried six different drugs in various combinations, but none have worked to reduce Vivian's seizures. The Wilsons learned that marijuana was effective for Dravet from a Dravet parents support group on Facebook.

"I thought, 'Wow this is awesome,'" Meghan Wilson said. "Of course, I had smoked pot before in my youth, and I knew that it had a lot of medical benefits and that it wasn't harmful, but I never really gave it much thought for Vivian until then."

Meghan Wilson hopes one day her daughter will only need her diet and the marijuana. But for now, the Wilsons' lives revolve around coping with the seizures, which make even the simplest tasks a challenge.

"We were able to get her outside a little this weekend, but heat and sunlight are triggers," Meghan Wilson said. "So just to take her outside in our backyard we had to use the eye patch, a pair of glasses with a special lens, a cooling vest, cooling towels and a spray bottle to mist her all while keeping her in the shade."

Even if they wanted to put her in her wagon and take her around the block, Meghan Wilson said, they can't go far because they need to have the oxygen and rescue meds nearby.

"We are trying to teach our 4-year-old not use the word 'hate,' and the other day she caught me saying 'I hate seizures,'" Meghan Wilson said. "She said 'Mommy don't say 'hate,' and I said 'Oh no, we can say we hate seizures.' I hate them, I hate what they've done to my family, and I will do whatever it takes to reduce them for Vivian."
Michael June 25, 2013 at 08:53 AM
I applaud both the State assemblywomen and Senator for standing up to get this Bill passed. However, the biggest obstacle is yet to come, and that is Gov. Christie. He has already made his stand and I think he will refuse to sign this, and if that is the case, be prepared to move to Washington, Colorado or California. One thing Christie is not, is compassionate or caring. I am also convinced he will NOT allow that one strain of pot to be grown for one person. It is not cost effective. The Wilson's may want to consider relocating to Ca. where this strain is easily available. SO sad Christie puts his "reefer madness" mentality before a child that is desperate for the right care.
Ml June 25, 2013 at 11:19 AM
I've been open to MM and I don't see a down side except too much of a good thing...time to end this prohibition
steven Jacobs June 25, 2013 at 11:34 AM
hook 'em while they are young.
luis June 25, 2013 at 11:58 AM
There is no way Christie is going to lose this election ,you got to love this guy ,he looks for any opportunity to please the low life liberals at any cost ,so they can vote for him ,way to go CHRISTIE !!
toby June 25, 2013 at 12:05 PM
For crying out loud help this child and pass the law you cruel,evil anti-marijuana haters.
D June 25, 2013 at 12:40 PM
ONLY A MATTER OF TIME.......... AS SOON AS THE GOVERNMENT CAN TAX THE SALE OF LEGAL MARIJUANA (soon available at your local 7/11) IT WILL BE EVERYWHERE. MY HOPE IS IT REPLACES DRINKING AND DRIVING ` A FAR GREATER KILLER THAN "The Killer Weed" !!!
John C Uncapher June 25, 2013 at 12:43 PM
This comment is for Steven Jacobs and all the other idiots out there who have been brainwashed by our government into believing that marijuana is addictive. Your comment “hook 'em while they are young” shows just how ignorant you are when it comes to the issue of medical marijuana!!! Certain strains that are low in THC and that have a high CBD level can be ingested by either eating the raw plant or by using a method known as juicing, and neither of these methods will get the patient “HIGH”, and it is “NOT” addictive. Our federal government allows the sale and use of cigarettes which are known to be addictive and have very serious health risks, but they do not allow the sale or use of marijuana which contrary to belief is not addictive and has “NO” side effects. Furthermore there has never been one single death from the use of marijuana, “EVER”, while cigarette use on the other hand has killed millions of people, and not all of them were actual smokers, second hand smoke from those who do smoke is just as serious a health risk to those of us who don’t smoke, and is as serious as if we actual smoked a cigarette as well!!! I’ll bet you’re probably one of the many morons in this country that still believe Christopher Columbus actually discovered America, just because our government fed us those lies during our school years, the fact is Leif Ericson discovered America nearly 500 years before Columbus even came close to our shores, so keep in mind that just because the United States Government says something, that does not mean it is actually true. I’ll also bet you actually think the Wright Brothers were really the first men in the entire world to fly, yeah, that’s just another one of our countries many lies. All of you believers may want to stop and ask yourself why our government continues to teach us a bunch of lies instead of just admitting they were wrong, and changing the history books to tell the real truth in these matters. Please crawl back under the rock you crawled out from under!!!!!!
John C Uncapher June 25, 2013 at 12:52 PM
This comment is for Steven Jacobs and all the other idiots out there who have been brainwashed by our government into believing that marijuana is addictive. Your comment “hook 'em while they are young” shows just how ignorant you are when it comes to the issue of medical marijuana!!! Certain strains that are low in THC and that have a high CBD level can be ingested by either eating the raw plant or by using a method known as juicing, and neither of these methods will get the patient “HIGH”, and it is “NOT” addictive. Our federal government allows the sale and use of cigarettes which are known to be addictive and have very serious health risks, but they do not allow the sale or use of marijuana which contrary to belief is not addictive and has “NO” side effects. Furthermore there has never been one single death from the use of marijuana, “EVER”, while cigarette use on the other hand has killed millions of people, and not all of them were actual smokers, second hand smoke from those who do smoke is just as serious a health risk to those of us who don’t smoke, and is as serious as if we actual smoked a cigarette as well!!! I’ll bet you’re probably one of the many morons in this country that still believe Christopher Columbus actually discovered America, just because our government fed us those lies during our school years, the fact is Leif Ericson discovered America nearly 500 years before Columbus even came close to our shores, so keep in mind that just because the United States Government says something, that does not mean it is actually true. I’ll also bet you actually think the Wright Brothers were really the first men in the entire world to fly, yeah, that’s just another one of our countries many lies. All of you believers may want to stop and ask yourself why our government continues to teach us a bunch of lies instead of just admitting they were wrong, and changing the history books to tell the real truth in these matters!!!
Lisa Skowronski June 25, 2013 at 11:02 PM
Wilson Family, you are in my prayers daily! I have faith that this will have a great outcome for your family. Have faith as well! God watching over you all!!
Paul Paul July 08, 2013 at 04:04 AM
To cause suffering to anyone by needlessly denying them medication in time of illness is no different to beating someone with a stick. And it happens on a large scale and happens as the result of wide spread persecution of minority groups and the poor which makes it a "Crime Against Humanity". “In strict medical terms marijuana is far safer than many foods we commonly consume. For example, eating 10 raw potatoes can result in a toxic response. By comparison, it is physically impossible to eat enough marijuana to induce death. Marijuana in its natural form is one of the safest therapeutically active substances known to man. By any measure of rational analysis marijuana can be safely used within the supervised routine of medical care". [DEA Administrative Law Judge - 1988] ― Francis Young
Uss Liberty August 18, 2013 at 04:04 PM
I hope you find out about THC-FREE CBD: http://www.hempoilshipping.com
Uss Liberty August 18, 2013 at 04:05 PM
I kept hearing about this little girl, so pls visit this: http://www.hempoilshipping.com
Gary Kane August 19, 2013 at 02:10 PM
I'd like to do an event that will bring more attention to this issue as well as raise money for the family's expenses. If someone knows how to contact these folks, I'd greatly appreciate it tx. www.rock2therescue.com

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