In debate on medical marijuana, enter twins, age 3

Shannon Moore's twin boys, Nicolas and Byron Dellyannis, have Miller-Dieker syndrome.

ANNAPOLIS — Shannon Moore's twin boys had their first seizures at home, when they were just 4 months old.

And at the hospital, where Moore and her husband hoped to find help for their sons, doctors couldn't promise any relief.

"They told us that (our sons) had a rare genetic disorder that caused them to have deformed brains and not to look too far into the future," said Moore, of Frederick.

The mean life expectancy for children with Miller-Dieker syndrome is two years, so at age 3, Nicolas and Byron Deliyannis have already beat the averages, Moore said. However, their first years of life have included almost daily seizures and a parade of medications to control the epilepsy. Moore has watched her twins take medicine that can be addictive, medicine that can be toxic, medicine that can cause blindness.

And no matter what they try, the seizures are able to break through the medication, Moore said.

However, a CNN report that mentioned marijuana's potential for calming seizures in children gave her hope that better treatments were possible. The only problem: There is no legal way for her to get medical marijuana in Maryland.

During this session of the Maryland General Assembly, Moore said she is lobbying for change so that, perhaps, her twins will have the chance to try the treatment.

Now, she is making her case through email and phone calls from a room in Children's National Medical Center; her two sons are recovering from a feeding tube surgery that became necessary because seizures have diminished their appetites and made it difficult for them to swallow. 

With numerous marijuana-related bills on the horizon this session, Moore has teamed up with former Frederick Alderwoman Karen Young and Delegate Patrick Hogan to highlight the substance's potential benefit to children with epilepsy. 

"I know it's a controversial issue, but at the same time, if it's something that can help her kids, then I feel like it's worth doing," said Hogan, R-District 3A.

Twenty states and Washington, D.C., currently allow medical marijuana. Of those, only two states bar minors from receiving the treatment, said a spokesman for the organization Americans for Safe Access.

Young said she has reached out primarily to Senate lawmakers on Moore's behalf. Hogan says he has spoken with Delegate Dan Morhaim, a physician and leading advocate for permitting medical marijuana. This session, Morhaim, D-Baltimore County, said he plans to sponsor a proposal that could enable children with epilepsy to receive the treatment.

Last year, Maryland passed a bill that would give patients access marijuana through academic medical centers. But so far, none of the academic institutions has taken advantage of the new law, so there is still no legal pathway to marijuana-based treatment.

Morhaim said his new proposal would also allow Maryland physicians on staff at a hospital or hospice to recommend medical marijuana for patients with certain conditions. The bill will likely get introduced in the Legislature next week, he said.

He noted that marijuana is less dangerous than many other drugs he prescribes every day, such as blood pressure, diabetes and pain medicines.

"In fact, there are medicines you can get over the counter that can have potentially more serious side effects than marijuana," he said.

Delegate Michael Hough said he hasn't seen Morhaim's proposal and doesn't want to comment on it. However, he has opposed other medical marijuana bills out of concern that easing up on medicinal uses could lead to full-blown legalization. At a time when Frederick County is struggling through a drug abuse epidemic, lawmakers need to take a tough stand on marijuana, he said.

"I want to make sure I have our law enforcement's back when they're trying to fight against these drug dealers," said Hough, R-District 3B.

Moore said she used to think "medical marijuana is a joke," but she has completely reversed her opinion. While the substance likely wouldn't take away her sons' seizures, she said it might perform as well as their current medications, but without some of the harmful side effects.

"In all likelihood, it wouldn't mean life or death, but it could mean that they would be healthier and happier for longer," she said. "I just want to know that I've done everything I can for my kids."

Follow Bethany Rodgers on Twitter: @BethRodgersFNP.

(27) comments

cubcub82

Watson ive always liked you for some reason now i know why!

watson4sherlock

Did the mother take the scoop when she wrote the letter to the Baltimore-Sun?

See http://articles.baltimoresun.com/2014-01-22/news/bs-ed-medical-marijuana-letter-20140122_1_medical-marijuana-medical-cannabis-dan-morhaim

cubcub82

L zook REALLY! You leave a comment to say the FNP has plagerized but leave no substance to the issue in the article. THANKS!!!

L Zook

Read George's blog and read this. Ongoing scooping of his journalism. I read them both and have noticed this over and over again.

L Zook

You used the word "plagerized", I did not. Make your own determination. Here is something else you should take a look at.

.http://en.wikipedia.org/wiki/Journalistic_ethics

L Zook

George Wenschoff wrote of this issue 9 days ago in his blog. In fact he almost wrote this story for you. You guys scooped it and did not give him credit for the story. This is a repetitive pattern you all have at the FNP. http://airitoutwithgeorge.blogspot.com/2014/01/karen-young-lobbies-for-medical.html
A news organization that will not pay an independent journalist, aka, "the man on the street", because they lack the where with all or maybe are just too lazy to get out there and beat the pavement, gathering their own information, is pretty pathetic and outright infuriating.
I told George he ought to expose you for what you are. But being a responsible journalist in a small city, he hesitates. FNP Readers- Subscribe to George's blog and send him a $20 or a Ben. He is the guy doing all the work and getting no pay check from the FNP. He relies on reader support! [sad]

cubcub82

http://en.wikipedia.org/wiki/Charlotte%27s_Web_(cannabis). This is the wiki website that explains the strain and its purpose. Also i stand corrected the Miller Brothers are a different family and subject. The scientific angels that created this strand are the Stanley brothers (Joel, Jesse, Jon, Jordan, Jared and Josh[4]).

Watson4Sherlock you can find it cheaper. Supply and demand. Once more people realize that CBD is a viable alternative to the crap the pharma companies push down our throats things will change. At least i hope. Tell me why i take 5 medications and 2 of them are just for the side effects from the other 3?

watson4sherlock

What will it cost? Will it be covered by Medicaid, Medicare, and health insurance?

A month’s supply of the oil can cost $150 to $250, and some families say they receive financial help from a nonprofit group related to the dispensary called the Realm of Caring Foundation.

See http://www.nytimes.com/2013/12/06/us/families-see-colorado-as-new-frontier-on-medical-marijuana.html?_r=0

cubcub82

Shannon Moore. CBD is the active (pain killer) in Marijuana. The Miller brothers have cloned a strain called Charlottes Web (NO THC). It has been a miracle to many families who have children suffering from seizures. It also has been proved to help people with Auto immune diseases. My mom has an auto immune disease and i trully feel her quality of life would be far better if she had access to this medication. With that in mind search CBD there is a company that distributes CBD in pill form and its legal. I forgot the website but strongly encourage you to contact the Miller Brothers of Colorado.

watson4sherlock

If they don't pass the law right, this could happen here also.

When New York moves ahead with its planned legalization of medical marijuana for the chronically ill, Missy Miller's epileptic son Oliver will be left behind.

Patients will have little say in the marijuana they are prescribed and people like Oliver - who could benefit from a specialized strain known as Charlotte's Web that is high in the compound cannabidiol, or CBD, - would be cut out entirely.

See http://www.reuters.com/article/2014/01/08/us-usa-marijuana-newyork-idUSBREA070TM20140108

watson4sherlock

How about just legalizing the cannabis oil and forget the joint. Parents taking the child's prescription medication is unlawful.

Toddler With Cancer Takes Cannabis Oil
March 24, 2012

"Before he ever received any oil, I'd give myself 10 times the amount I was going to give him to be sure of the effects," Hyde said. "I came to the conclusion that this drug was safer than any other drug for him."

See http://abcnews.go.com/Health/toddler-cancer-takes-cannabis-oil/story?id=15981324

xroads1213

They are treating children in Colorado already. Don't wait for Maryland. They aren't very good at getting things done right.

watson4sherlock

There may be no treatment just an end to the suffering.

See http://www.liamsroom.org/liams-story

watson4sherlock

We present the case of a 10-year-old boy who presents with a severe epilepsy resistant to medical treatment in the context of a Miller-Dieker syndrome. This patient underwent the implantation of a pneumogastric nerve stimulator. We describe the patient's clinical history and the main characteristics of lissencephaly syndrome.

See http://www.ncbi.nlm.nih.gov/pubmed/17511379?report=abstract

watson4sherlock

Because the seizures are caused by an abnormally formed brain, I would be concerned that marijuana wouldn't work any way. Plus it took Colorado and Oregon years to get their medicinal marijuana programs running. Would this even help the boys?

See http://ghr.nlm.nih.gov/condition/miller-dieker-syndrome

guido207

The Moores deserve the right to alleviate their sons' pain any reasonable way they can.

What about the thousands of other who are also suffering needlessly?

watson4sherlock

Parents take their children to shrines or to swim with dolphins trying to find healing. It is cruel to take advantage of them.

DC has legalized medical marijuana. What are they waiting for? Just need a cute poster child?

A small faction of parents calling themselves marijuana "refugees" are heading to Colorado in order to obtain medical marijuana for their children who suffer from epilepsy.

With the cannabis oil formulated by the Stanley brothers, Charlotte went from having a seizure every 25 minutes to zero or one a week. The oil was then renamed "Charlotte's Web," so named for Charlotte.

See http://www.huffingtonpost.com/2013/10/21/medical-marijuana-pediatric-epilepsy_n_4137260.html

xroads1213

Now you're a doctor?

watson4sherlock

When you are a parent sometimes you have to find your own solutions otherwise you consent to having your child's leg amputated when it is not necessary.

2003—Amputation avoided by bone grown from bone marrow cells: In July 2003, orthopedic surgeon Michael Ehrlich, MD, performs a first-of-its kind procedure to help grow bone in the leg of nine-year-old boy born without a fibula. By using bone marrow cells from the patient's pelvis, combined with demineralized bone matrix, Ehrlich succeeds in growing bone alongside cartilage in the patient's leg. Without this procedure, the conventional option would be amputation of the child's leg.

See http://www.hasbrochildrenshospital.org/hasbro-childrens-hospital-milestones.html

BossIlluminati

the greatest plant in the universe is almost free, LET FREEDOM RING!!!13

from 0 states to half the country, from low 20% approval to almost 70%, cali runs this planet by 20 years

20 years behind us southern states, sad and scary...nobody denies freedoms like the south, nobody....even if the people did vote for it the republiCANTS that run the south would deny you all your freedoms, centuries of practice....no matter though, we never planned on getting your backwards brethren from day one, half the country now...love and freedom forever....

MARIJUANA SUPER BOWL 2014, free state vs. free state.....destiny

AMERICA'S WAR ON DRUGS IS A WAR ON AMERICANS!!!33

Linganore Native

"they're trying to fight against these drug dealers," said Hough.... Why keep the fight going? If it was legal there would be no more dealers and the government can tax it. Its a win win. The drug cartels use marijuanna as their main source of income to buy harder drugs from south america, without it they are crippled.

girlpolitic

"Based on a CNN Report." Are they serious? What is needed and is absent is a medical professional that familiar with the children's case and recommends the treatment. Also, what does Karen Young have to involve herself. The parents should contact Ron directly.

guido207

Like so many social issues, this one needs more empathy and compassion, and both of these come from shared experience and understanding other people's daily reality.

Personally, my heart breaks for these twin boys and their parents. I support medical marijuana 100%, and will support candidates for state office who support it.

cmyladybug04

[thumbup]

DebtFree

Medical marijuana is less detrimental to the public than acetaminophen.

MCEDDE21

"easing up on medicinal uses could lead to full-blown legalization. At a time when Frederick County is struggling through a drug abuse epidemic, lawmakers need to take a tough stand on marijuana, he said." Is that what ALEC told you to say? This is sheer nonsense and serves only Big Pharma. No one has ever died from marijuana, unlike Tylenol, for example, and numerous other prescription drugs. Marijuana and its derivatives are cheap, effective, and safe.

How can anyone stand off and temporize, while these babies, other children, and adults, suffer from their debilitating and agonizing conditions? It's always about the money for people like Hough. It's always about marginalizing a few and serving up campaign platitudes for the many. That isn't leadership, Hough. You make us sick.

cmyladybug04

You know for an absolute fact that no one has ever died from it? Highly support it for medicinal purposes. I do however have a problem with vilifying people that do not agree with you. Do you know what the opposing people are feeling? Notice I said "
what they are actually feeling, not what you think they are feeling.

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