Friday, January 22, 2016

Canna oil, prohibition and an open letter from a parent

Posted By on Fri, Jan 22, 2016 at 12:39 PM

Miriah and her son - SUBMITTED PHOTO
  • Submitted photo
  • Miriah and her son

EDITOR'S NOTES: Miriah Stewart Mershon has a child with Dravet Syndrome, a condition that has been succesfully treated with a cannabis extract called CBD — NUVO profiled her in a story about the various kinds of cannabis and hemp prohibitions that still grip this state. 

That story can be found here.

In that story, we outlined that the strain of cannabis used to treat this syndrome doesn't get the user high. Its THC content is next to nil.

In this Indiana legislative session, Sen. Jim Tomes authored a bill that would essentially legalize CBD specifically for medicinal purposes. Senate Bill 258 is summarized thusly:
Cannabidiol for the treatment of epilepsy. Provides that certain prohibitions against granting a license to a grower or handler of industrial hemp do not apply to growers and manufacturers that process cannabidiol (CBD) and meet certain requirements. Requires the state seed commissioner to establish testing standards for CBD. Establishes requirements for facilities and manufacturers that manufacture or process CBD. Allows CBD that is manufactured and tested in Indiana to be used by certain physicians, patients, and caregivers. Establishes a CBD registry for certain physicians, patients, and caregivers for the use of CBD from hemp in the treatment of a child with intractable epilepsy. Establishes a pilot study registry for physicians interested in studying the use of CBD in the treatment of intractable epilepsy. Requires the state department of health to develop and maintain both registries. Provides civil, criminal, and administrative immunity for: (1) physicians in the use of CBD in the treatment of intractable epilepsy; (2) certain growers of industrial hemp; and (3) facilities and manufacturers of CBD; if certain requirements are met. Exempts caregivers and patients from criminal penalties for possession or use of CBD if the caregivers and patients are registered with the state department and are using the CBD for the patient and in the manner approved for registration. Encourages state educational institutions to research the use of CBD in the treatment of intractable epilepsy.
Senator Patricia Miller (R), chair of the committee this bill was referred to — Health and Provider Services — has essentially killed the bill in committee. What follows is an open letter from Miriah Stewart Mershon to Senator Miller, originally posted on Facebook and reprinted with permission verbatim.

Here is my letter to Senator Miller. Please read and use whatever information you need to compose your own emails or phone calls. Her email is and her phone numbers are 317-232-9489 or 317-232-9400.

Dear Senator Pat Miller,

In response to your recent 'killing' of Senator Thomes bill SB 258, I find your actions highly deplorable. Your statement that there was not enough interest within the Senate to even hear this bill is, to me, a personal decision, not one based on fact. I attended and spoke at several committee meetings in regards to the industrial hemp bill in 2014 and had enormous support. So much so that the bill passed the Senate floor unanimously. I have also had many senators and representatives approach me after my testimonies to offer their support and gratitude for helping to bring this topic to light. You see, I have a personal stake in this bill and I will work tirelessly to see it come to fruition.

My husband and I have a four year old child who suffers from Dravet Syndrome. Dravet syndrome is a rare genetic epileptic encephalopathy (dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. The disease begins in infancy but is lifelong. Jameson suffers from several seizure types including: Myoclonic seizures, Tonic clonic seizures, Absence seizures, Atypical absence seizures, Atonic seizures, Partial seizures, and Non-convulsive status epilepticus. Jameson has had seizures that last more than an hour and had so many clustered together it is impossible to keep count. With your medical background and training I am positive that you can interpret this information for what it is...a poor prognosis.

Now let's talk about how this affects the lives of my family. Every day Jameson needs medicine at 6am, noon and 6pm. Daily, I open his door and the breath catches in my chest as I say a prayer that I will hear movement from his bed. Did my son perish in the night? After my heart stops racing, I begin to get him ready for his day. First and foremost is always his medicine. Then I spend the next 10 minutes dressing him as he fights through a series of myoclonic jerks. The 'I'm not awake yet' stage for Jameson is pretty tough. Since he is non-verbal, he cannot tell me when he feels a seizure coming on or when he is finished. Then I herd my two daughters to the car as I carry Jameson and his emergency bag. He must always have an O2 monitor, oxygen, his VNS magnet, and emergency meds along with his regular medications. I drop him at the sitters, drop the girls at school and then drive 40 minutes to my job.

I work for IU Health Arnett in an OB-GYN office. I spend all day helping other women bring healthy children into this world. Before and after each patient, I check my phone for messages from the sitter about my son. I have met the ambulance many times at the hospital due to seizures that were not responsive to the VNS or meds.

After work I drive straight home to help my husband with the daily routine of homework, sports, extra curricular activities, dinner and of course, caring for Jameson. Since some of his seizures are hard to detect unless you are used to him, he is under constant supervision. My husband and I must divide all activities with our daughters so that one of us can be with them and the other at home with Jameson. Due do heat being a trigger, Jameson cannot attend his sisters swim meets or softball games. Because over stimulation can trigger a seizure, he cannot attend volleyball games or choir concerts.

Finally, at the end of everyday, we all kiss Jameson goodnight and he is put to bed. I think even my daughters understand at 12 and 8 that they are kissing him 'just in case'. When I finally go to bed I pray for God to heal my son and hope that his seizure monitor doesn't go off in the middle of the night signaling yet another seizure and sleepless night.

Since medical bills are quite overwhelming, my husband works overtime most weekends to cover these expenses. This means I am on my own to handle any activities for the girls and to care for Jameson. I cannot take him to the grocery store (the lights and people trigger seizures), all summer outdoor activities or off limits (heat), any indoor recreational facilities (bounce houses, trampolines, playgrounds) are too stimulating and for the past year, church has been impossible due to the stained glass windows and the pattern in the ceiling tiles triggering seizures.

Why is it that a bill to help children with epilepsy is always lumped together with medical marijuana for all? The bill that was proposed was for a registry of approved CBD users. This would allow me to give my son the CBD oil without fear of retribution or arrest. Had you come to any of the hemp hearings or attended the exploratory hearing this summer (that had such little interest it lasted 6 hours and speakers were being cut off) you would have learned that CBD oil has little to no THC. I don't know how to make that more clear. You would have witnessed parents in desperate situations, not drug abusers. I have met several other families with children with Dravet, CDKL5 and undiagnosed seizure disorders and these people are not drug abusers. Believe me, the strict regimen, endless care and constant insurance issues are hard enough to handle with a clear head. Marijuana is not our religion, it is not our way of life and I could care less about the legalization for recreational use. I am frankly no too happy about being pigeon holed into that image.
Senator Miller, I wonder what you would have done had one of your children, or your grandchildren been diagnosed with a disorder as severe as this? Would you have sat back and let nature take its course? Would you fight for anything to help your family? Would you know what pain I feel every day as I give my son medicine to save his life that day, knowing that it will likely cause his death in the future? Would you be okay giving medications that 'sort of' work but cause liver and kidney damage? Would you consent for your two year old to have surgery to implant a device that is 'helpful' in preventing and stopping seizures?

I am curious what is more 'interesting' to your committees.

I will end with this: My son is a blessing. He has changed more lives in his four years than most people do in a lifetime. Jameson is happy and makes us happy. He may not speak but his mommy can and I will. God gave us this blessing and this trial for a reason and we will succeed.

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