Tag Archives: Dravet Syndrome

The Latest in the Fight for the Children

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Charlotte Figi

Tonight at 5:30, WRAL did an excellent report on Dravet Syndrome and the struggle to get Charlotte’s Web legalized in North Carolina. (Please read in this blog for further details, beginning on January 17th.) This report was much more thorough than the NBC 17 report, in that the reporter interviewed our neighbors here in Clayton and then traveled to Colorado to interview the Raleigh family who decided to live apart in order to get treatment for their daughter. The mother and daughter live in Colorado, but the dad has to stay here for his job. You may watch the video here. The results are amazing.

After a while, it is difficult to see why anyone would hesitate to legalize this oil that would help so many suffering children. We have been writing to our legislators and have come to understand that the time to act politically is now. Once the North Carolina legislature comes back into session in May, they will just be voting on the legislation that is being drafted and debated in committee right now. If you live in North Carolina, it is easy to find your representatives here. Just type your address into the maps for representatives or senators, and then click to open the page. Your person’s address, email, and other information will come right up. They will respond to you, since many people are writing to them on this issue at the moment, and the media is really helping. The legislators just need to know that there is widespread support for this medication among the voters.

If you live in other states, be assured that there are children there that need your help. There are over a thousand families on the waiting list for Charlotte’s Web, so you know that some of them live near you. They will all have to move to Colorado when their number comes up, so if you love them and want them to stay, you can do something about it right now. Just type and click!

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Oh, No! It’s a Plant!

ImageLast night, we were eager to watch WNCN’s segment on our neighbor, Zora Carlin, her family, and other families similarly affected by seizure disorders. The anchorwoman warned that the video might be hard to watch, and she was correct. I had never seen a child having seizures before, and when the segment was over, my son found me sobbing in the living room. You can see the video here. I’m sure you will be similarly touched.

It is so important to have more and more people informed about Charlotte’s Web, the cannabis oil that has an 85% success rate in helping children with seizures, according to the Realm of Caring, a non-profit organization in Colorado that is helping patients with everything from cancer to HIV/AIDS. According to WNCN, there are thousands of children on the waiting list for Charlotte’s Web; they just can’t grow it fast enough. As a North Carolinian, I say, why should we hear that giant sucking sound in the west? Why can’t our neighbors stay here and still have healthy children?

One reason is the misguided attempts by anti-drug forces to conflate medical uses of plants with junkies lying in gutters. WNCN included Skype interviews with Bertha Madras, a professor of psychobiology at Harvard University Medical School. Dr. Madras was appointed as Deputy Director of Demand Reduction for the White House Office of National Drug Control Policy by George W. Bush in 2005. In other words, her job is to stop people from taking drugs, a very laudable goal, to be sure. However, Dr. Madras has carried that goal to some controversial lengths, according to some*, such as working against allowing heroin addicts to carry the overdose antidote, naloxone, because she opined that addicts who knew that they wouldn’t die might be more careless and take more heroin. That is extremely logical and possibly true, but if it saves their lives, wouldn’t it be worth it? Not to a government agency or university professor, perhaps, but oh, say, to their mothers?

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Charlotte Figi

In a similar manner, Dr. Madras is concerned that Charlotte’s Web has not been approved by the FDA. As she said, it “is not a medicine,” it “is a plant.” This is such a confounding statement, freighted with assumptions. Let’s unpack it for a moment. From the way that it was said, one must assume that Dr. Madras considers medicine to be a good thing (which it generally is), and plants to be, if not bad, at least dangerous. In the WNCN segment last night, one can see all of the prescription bottles filled with pills that a tiny, little five-year-old girl has to ingest every day. They all, according to her father, have side effects. Her mother mentioned that Zora had been prescribed 20 mg. of Valium every, single day. How many adults could function that way? Obviously, the families of children with Dravet Syndrome have tried twenty-first century medicine and have exhausted their options. As I described in my earlier post, “Zora Needs Your Help,” (January 17, 2014) many of our most common medications are derived from plants. I grow vegetables in my garden in the summer. I have trees all over my yard. When someone says, “It’s a plant,” I don’t hear horror movie music in the background.

Granted, we are all grateful that the FDA saves us from being at the mercy of dangerous substances, keeping our food supply clean and carefully testing our medications, but they are a gigantic government organization, and as such, they can’t help but move like the Vogons in Hitchhiker’s Guide to the Galaxy. In the same way that I research the origin of the foods that I eat and trust Whole Foods more than Wal-Mart for meat, I look up my medications and talk about them with my doctor. Sometimes the gatekeeper is just keeping the gate closed on general principles, not for good reasons. We won’t even get into lobbyists, research grants, pharmaceutical companies, and other such entanglements.

ImageBack in 1994, my friend’s mother, Mary, was diagnosed with non-Hodgkin’s lymphoma, as was Jacqueline Kennedy Onassis. As one of the wealthiest women in the world, Ms. Onassis received the best conventional treatment possible, and yet she died on May 23rd, the same day as Mary’s first illegal nontoxic chemotherapy treatment. Mary’s husband was a professor, and so he was one of the first people I knew who had the internet at home. He researched thoroughly, mortgaged their house, and flew his wife to Texas, where a doctor was willing to try unconventional treatments for cancer. They worked. After the doctor was arrested and shut down, Mary flew to Bermuda to continue treatment. She also maintained a careful macrobiotic diet (plants!) and supplements. Today, she is in her eighties, still lunching with the ladies and living a happy life. Her treatment is still not approved by the FDA. Do you think she or her family cares?

The point is that children with Dravet Syndrome do not have time for the FDA to spend decades on testing, nor do they have time to elect new legislators who will care about children without worrying about how support for medical marijuana might affect future elections. We all need to work with our current legislators. You may be surprised, as I have been, at how compassionate they are. They just need information. Call them. Write to them. These are the United States; if a child can get medicine in one state, she should be able to get it in all states. Please hurry! I don’t want my neighbors to move to Colorado.

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Information on Bertha Madras is taken from the following sources:

*Wikipedia. http://en.wikipedia.org/wiki/Bertha_Madras. Accessed on February 15, 2014.

“Medical Marijuana Reflects an Indifference to Public Health,” [a paper] by Bertha K. Madras, Ph.D.  http://www.drugfreebusiness.org/Media/documents/Reference%20Documents/Madras_Cannabis_Feb_2011.pdf Accessed on February 15, 2014.

*The Fix, an addiction and recovery website. http://www.thefix.com/content/otc-naloxone-fda-meeting8410. Accessed February 15, 2014.

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Zora Needs Your Help

ImageOur next-door neighbors, Steve and Dawn Carlin, have two beautiful little girls. Eva is the older sister, a lively gymnastics champ whom we expect to see in the Olympics a few years from now. Zora is the younger daughter, a sweet and loving child whose biggest triumph is getting through each of the twenty or thirty seizures that she has each day.

During more than one night when Zora was just a baby, we saw red, flashing lights and rushed to our windows, then prayed when we saw the ambulance workers taking the tiny child to the hospital. Since her mom is a nurse, we knew that something had happened that was even beyond her skill, at least at home. We found after a time that Zora had epilepsy and that Steve and Dawn were working tirelessly to find doctors who could help her. They tried many, many serious medications and treatments, including the ketogenic diet. Imagine if your four-year-old could only eat fat: pure butter, mayonnaise, and so on. Imagine trying that for a month and it doesn’t even work.

It turns out that Zora does not just have epilepsy. This year, the Carlins found out that she has Dravet Syndrome, a mutation of the SCN1A gene. It is not hereditary; it causes developmental delays; it can be fatal; and at this time, it is not curable. Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), this disorder came into the limelight on CNN last year with the story of a little girl named Charlotte, who had up to 200 seizures daily. Like the Carlins, Charlotte’s parents had tried everything and researched tirelessly. They heard that a certain form of medical marijuana was showing promise, and they were able to obtain a small amount for a great deal of money. Charlotte’s seizures stopped immediately. You can read the CNN story here.

Charlotte's Web plantsThe type of medical marijuana that Zora needs is more accurately described as cannabis oil, now popularly known as Charlotte’s Web, after the child described above. It is only 1% THC, so there are no narcotic effects. Steve tells me that it was discovered while people were trying to make a stronger form of marijuana and failed miserably, so it is also known as Hippies’ Heartbreak. Rather, this strain of marijuana is high in cannabidiol, or CBD, which has no intoxicating effects at all. Unfortunately, Charlotte’s Web and all kinds of medical marijuana are illegal in most states, including North Carolina. Steve and Dawn have joined support groups and written to our legislative leaders numerous times with no result. The politicians read up to the part about marijuana and they can’t see anything else. There has been another famous case of Dravet in North Carolina recently, and the family ended up having to establish residency in Colorado. Now the family lives apart, since the father needs to stay in North Carolina for his job, and the mother and child live in Colorado so that the child can receive treatment. This is ridiculous!

Opium_poppyAs far back in history as we have written records, we know that plants have been used as medicine. White willow bark was used by the Native Americans for pain relief, and now the chemists render it as aspirin. Of course, you can still find the willow bark in health food stores. Many people take Echinacea to build the immune system, and the pretty foxglove flowers that we had in our yard in Georgia are the source of digitalis, a heart medication. Even closer to medical marijuana, we have used medicine from the opium poppy for centuries. When my mother was in the hospital in horrific pain last summer, she was given Dilaudid for relief. Laudanum in Victorian times, opium in the middle east, cocaine to Sherlock Holmes, and morphine to many patients today— they are all derived from the opium poppy. Dilaudid’s street name is Hospital Heroine. Did she get addicted? Yes, but she got over it and is now happily living alone at age 86. She would not have survived without this drug. What if the government denied it to her because some people use cocaine recreationally? Why should that even have any bearing on the question at all?

Zora’s parents know that there is a drug that can help their daughter to find relief from her constant seizures and the cognitive damage that they cause, but the government will not allow them to purchase it. We can all help by informing our legislators—and anyone else who will listen—about Dravet Syndrome and the success of cannabidiol in its treatment. Many children die of Dravet, so time is of the essence. If you would like to know more, you can go to the websites www.dravet.org, a family resource and support group site, or www.dravetfoundation.org, a nonprofit group dedicated to research. You can also Google “Charlotte’s Web,” and after the book and movie hits, you will see many news articles about Charlotte’s family and the progress being made in other states with the legalization of this drug. Wherever you live, there are children with Dravet who need your help. Cannabidiol is not a cure, it’s just a treatment, so if you are so moved, you may wish to donate to the foundation to further their research for a more permanent solution. The Carlins and Zora’s story will be on NBC17 (WNCN) in February.

Please remember Zora in your prayers, and when you hear conversations in the future concerning the legalization of medical marijuana, please try to inject some sanity into this often hysterical discussion. It’s not about abusers getting high; it’s about kids who can learn to talk and read and have friends for the first time in their lives.

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