Tag Archives: medical marijuana

Current Events, Medical Marijuana

People should not have to leave their homes so their children can receive medical treatment.

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Photo taken from Faces of Cannabis web site.
Photo taken from Faces of Cannabis web site.

This is Hunter and he is eight years old. I met his mom, first at a music class she attended with her younger child, then I saw her again at the pool where Hunter and Connor both receive aquatic therapy. One day I realized I hadn’t seen them in quite some time, only to meet mom and dad again in a Facebook group. They had moved to Colorado to obtain treatment for Hunter after several seizure medications, VNS and the ketogenic diet failed him.

They have finally found an effective treatment in the form of medical marijuana–20 minute seizures are down to two minutes and he went six days straight seizure free for the first time in eight years –but now they can’t come home to Georgia. And they aren’t the only ones. Many families have left everything behind to move to Colorado to obtain access to medical marijuana. Charlotte’s Web is a well-known strain featured in the CNN special with Dr. Sanjay Gupta and created by Realm of Caring. It is low in THC so the kids do NOT get high, and it is in the form of an oil, so they do NOT smoke it. Sometimes people even have to leave other legal states so that they can get the form of marijuana their child needs. New Jersey is such an example. Though medical marijuana is legal, Gov. Chris Christie has made it exceptionally difficult for families to get what they need.

From the Huffington Post: “See this is what happens. Every time you sign one expansion, then the advocates will come back and ask for another one,” the governor proclaimed during a press conference from his statehouse office. “Here’s what the advocates want: they want legalization of marijuana in New Jersey. It will not happen on my watch, ever. I am done expanding the medical marijuana program under any circumstances. So we’re done.”

Remember that as he sets his sights on the Oval Office.

Georgia Governor Nathan Deal also opposes it.

These families want to come home. And I don’t want to one day face the same decision they have if we can’t get Connor’s seizures under control. If you are interested in the legalization of medical marijuana in Georgia, please check out this group.

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Modified Atkins Diet for Seizures, Parenting, Tuberous Sclerosis

Looks like we’re trying the modified Atkins diet.

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IMG_5584Sigh. I really hoped this wouldn’t be necessary, but the last increase in Onfi didn’t make much of a difference and we’re still at 1-4 seizures most days. I e-mailed his neuro and asked if he thought there would be any point to another increase, or should I just bite the bullet and move forward on the diet. I knew when I sent it what the answer would be since he had brought up the possibility of the ketogenic diet a few weeks ago. I was relieved that at least he thought modified Atkins was a reasonable alternative to keto. Not that I think MAD will be easy, but just the thought of keto intensely overwhelms me.

I keep reminding myself that if it works, it’s worth the extra effort, and if it doesn’t, we only do it for a few months. We”ll be meeting with a nutritionist at the CHOA keto clinic to start.

But if it doesn’t work…then what?

We’ve tried seven different medications, and even more effective cocktails only decrease seizures — they don’t stop them altogether. Sure, there are more meds we haven’t tried, but as I shared in my previous post about medical marijuana:

…less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations. -WebMD

I’m going to start this diet fully optimistic that it will work. Because if it doesn’t, the other options are to explore surgery again or live with the seizures. Sure would be nice to have the option of pediatric cannabis in Georgia. Please watch this clip from The Doctors in which Paige Figi explains what a miracle it has been for her daughter with Dravet Syndrome.

I am also seeking guest posts from people who are either legally using medical marijuana to treat their children, or are seeking it’s use — possibly entailing a move to another state. E-mail pin.the.map@gmail.com.

Petition for legalization of medical marijuana in Georgia.

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