Open letter from a Tennessee Mom

Sandy McClurg Bush writes:

I have been hesitant to talk about this publicly for obvious reasons, but have decided that the potential benefits for my family greatly outweigh the risks of negative backlash so here goes nothing…….

As most of you now know our son Cameron has a rare and catastrophic form of epilepsy called infantile spasms. Despite being on medications he is still having anywhere from 3-20 seizures every day, on average. Over the last few weeks I have spent many hours researching something that I now feel has a very real possibility of helping my son, medical marijuana. I believe that many people’s hesitations and oppositions to this are based on misinformation, so I would like to ask all of you to put aside what you think you know about it and allow me to share what I have learned through my many hours of research.

I have learned that medical marijuana has uses that I never knew about in treating Parkinson, rheumatoid arthritis, cancer (not symptoms of chemo, cancer itself) and others, but for obvious reasons I have focused on the treatment of epilepsy and more specifically pediatric epilepsy. 1. Children do not smoke the marijuana. It is administered in an oral form. 2. The strain that is used for epilepsy has less than 1% THC (what makes people feel high) and has usually 15-17% CBD or cannabidiol, which is what they believe acts as the anti epileptic. Because of the make up of these strains, they have no psychotropic effects, which ironically many seizure medication do. 3. These high CBD, low THC strains have virtually no side effects at all! Many seizure meds have horrible side effects and many of them are not even technically tested for use in children. Some of them sedate kids so much they can’t do anything but lay there in an almost catatonic state. Cam has been on a medication which shot his blood pressure up to 260/110 at the highest which is extremely dangerous. It also caused him to stop smiling, laughing, and basically doing everything that we had spent that last 6 months in therapy gaining and he only cried and moaned. And it didn’t even work to stop his seizures.

This week he will be staring on another medication which can cause permanent peripheral loss. That will be his third medication in 9 months we have tried. I could go on and on about this but I think you get the point about the side effects. I have watched videos of children with various forms of epilepsy who’s lives have literally been changed by medical marijuana. And to know that it is out there but that it is not an option for my son, simply because of where we live is literally painful for me. I watch him suffer and struggle every day and I have seen/heard/read enough that if it were an option for him I can tell you I would try it without hesitation!

I am asking all of you, but specifically my friends in Tennessee to support our family by sending an email to our state representatives asking them to support house bill 1385 (HB1385) for medical marijuana. They start back to work Tuesday and I think that we can make a difference if we show them that the people of their state care about this. Below are the 3 representatives that are for the area around where we live in Knoxville and also a link to the TN government page that has the whole list for the state. My friends in other states, there are kids like Cam suffering in every state and they could all use your support! rep.steve.hall@capitol.tn.gov rep.john.ragan@capitol.tn.gov rep.roger.kane@capitol.tn.gov http://www.capitol.tn.gov/house/members/

I would also invite you all to do your own research and not take my word for it. I do not claim to be a scientist or a doctor. I am just a mother trying to figure out how to give my son the best chance at the best life he can have! This is the link to a video about two children that I first heard about when starting on this journey. The stories of Charlotte and Zaki. I have watched it numerous times and it still gives me chills. Their success is amazing. Thank you all for reading this lengthy post. This means a lot to us! http://www.youtube.com/watch?v=S9qkYLtAhSQ

Editor’s Note:

You can use the following link to provide your address and it will email your legislature associated with your address. This is a link that the National NORML put together:

http://salsa3.salsalabs.com/o/51046/p/dia/action3/common/public/?action_KEY=12675

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5 Responses to Open letter from a Tennessee Mom

  • I feel that since the risk of injury to your son from man made seizure medicine far outweighs your risk of prosecution from using medical cannabis for his epilepsy !! Get a good lawyer if needed and fight for your right to use this God given plant, cannabis, as medicine for your son, his life depends on it ! My prayers are with you and I pray you will find the courage and strength to begin this new herbal therapy for your son, thank you for sharing your story, God bless !!

  • I have the same problems, I am an adult with epilepsy and no one can tell me this treatment doesn’t work. I know the truth and live it. I’ve listened to the lies the demonization of this plant and quietly know the truth for many years but have feared to speak. Laws like these make honest people criminals and jail thousands every year for using a plant that is harmless when used in it natural form.

    • I have refractory seizures-started when I was 52 yrs old – doctors do not know the reason for my seizures -have been everywhere -mayo clinic ,Vanderbilt-still having seizures-taken all kinds of medication ,not candidate for surgery-live alone-have no warning when seizure is coming on. Please I need help-I will be willing to try marijuana-at least it is natural. Please legalize for medical!!

  • There is a legal form of cannabis on the market in Tennessee, it’s called Marinol or generic Dronabinol. I have had epilepsy since I was a young man and was always ashamed of my condition plus the dangers that go along with grand mal seizures. I would have these at least once a week while taking normal seizure medications and many more without. In 2010 my doctor put me on this medication to treat a nerve neuropathy that caused great pain in my feet and legs. It also stopped the sickness caused from a narcotic pain reliever I had to take because of a bad back surgery. Since beginning this drug I have not had one seizure. Problem is it will cause a positive THC return on a drug screen, which can be very troubling with work, driving etc. This causes none of the dizziness or other side affects of the other drugs I have taken. I cannot tell there is any ill effects with this drug except the drug screen thing. People will condemn you for testing positive for THC on a drug screen, but don’t have a clue what life is like with a seizure disorder. Medication is out there but we must also inform our legislature that testing positive for THC on a drug screen is not always a bad thing.

  • Would love to hear a follow-up story. I have epilepsy and have unsuccessfully been on almost all the meds available and suffered a large variety of side effects from minor to serious and with life long effects. I decided to try ordering CBD oil online and smoking (not much) in March of 2014. I’ve had great results. Seizure free and no side effects or mood swings or depression since making this decision. I wish this family luck as it breaks my heart to know that there is real hope in dealing with such a horrible condition but it’s against the law to access it.

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