Again with the weed talk...

>> Wednesday, October 21, 2015

Bug...is doing well. 5 seizures last night, but 2 the night before and 1 the night before that. The roller coaster is in full swing, but really, so much better than the 10 he was having. And the Diastat he needed weekly, sometimes daily...haven't used it since we left Utah. I will take this improvement and I am very pleased with it. I do NOT second guess my work with Charlee's Law. I DO NOT. Some people believe that they need more THC and that is up to them, I hope it helps if they are taking that chance. It doesn't help Bug and luckily we were still within federal law when he tried it, but it was NOT a coincidence that it was bad for him. Because the CBD has been so good for him. And to me, in my limited understanding, it would make sense. Bug needs to speed up his brain, not slow it down. He has slow alpha waves so slowing his brain: not a good thing. At least not in that very fundamental way. For him, the higher CBD strain he is taking is great. He smiles at me, he comes when I call him, he is making noises that are very speech-like. It's pretty darn great. And with his history of all hell breaking loose for no apparent reason...we are NOT changing anything at the moment. NOT ONE THING. He is stable. Let's leave it there for a while, shall we? So when people try the higher CBD strains and use it like it is any other medication, it makes me crazy. There is a sweet spot with cannabinoids. Yes, our bodies have a system that recognize it and use it VERY efficiently. But when that system is overloaded, it's not a good thing. So the titration has to be slow and steady. One must be patient to not overshoot that optimum area of feeding the system what it needs without overloading it. Too much is bad. Get it? It is NOT your normal AED, folks. Yet, when they miss that sweet spot, they say: it worked and then...and then...
THEY usually finish with: It stopped working. We need more THC. Sigh. 

Maybe, but maybe not. THC is a proven pro-convulsant. Don't just use the studies that support your position, use all of them. THC is a pro-convulsant. You have to be careful if you have a low seizure threshold. Depending on your type of epilepsy, THC can make it worse. As of this moment, we can not say the same about CBD. So, no, you, most likely, thought more was better and overshot the target. More, is just more in this case. It is NOT more effective. It did not stop working. The patient was overdosed with CBD. What they should do is stay at one dose for 2 to 4 weeks before upping to the next dose. Yes, that slowly. We saw that with the Bugster. And many people have. Even with the higher THC strains: titrate SLOWLY. For pain...different ball game. Entirely different. Same with Cancer. But whatever the condition, I believe cannabis deserves its day in court. It deserves to be tested, and used as a treatment if tests bear out a positive result. Quantifying the term 'positive' should be left to the patient and their medical practitioner. It DESERVES to be used as a tool for improving quality of life. You SHOULD NOT tell me: But it's addictive. So is Hydrocodone, and Morphine and we use those. The addiction argument is really and truly invalid when discussing cannabis AS A TREATMENT. Do not breathe recreational use on my argument. We are talking medicine not your right to get high. Different argument entirely. There is a committee meeting today. They are discussing medical marijuana. I smile, because I WILL NOT tune in to listen. I can't. I won't. I am raw. I am done being beat up and ignored for this one thing. This wonderful and marvelous thing but there is more to me and more to my little man than cannabis. I am looking at my little man, my little cannabis user, and I delete my Facebook post that I was composing. Not before I copied it though. I need to have it in the ether. Somewhere in cyberspace, I just need it. I am so sick of it that I can't get into that on Facebook right now. I can not feel like I didn't do enough, that we didn't make a difference, that we had NOTHING to offer the people of Utah after all of the work and abuse we took. So I share it here for all 14 of you: "Let us be very clear so that everyone can understand the uphill journey this is, and if you believe that marijuana has a medical purpose, you better be very ready to defend that position and take a part in moving legislation forward: The Epilepsy Association of UT worked diligently to get a bill that would help its constituents. When we asked other groups to be involved, they politely declined. We were on our own. We had proof that high-CBD strains of cannabis are very effective for seizure control. AS effective as other medications and all with fewer side effects. We went into the legislative session asking for ALL neurological conditions to be included since we also had proof of its effectiveness for MS, Parkinsons, dementia among others, we HAD to concede that point, we had to agree to intractable epilepsy cases. AND it has been helpful for MOST of those cases. Regardless of the advertisement, almost 90% of our families that have reported are seeing an improvement. The bill includes safety for small amounts of THC with higher amounts of CBD. It is NOT a CBD-ONLY bill. It was the FIRST bill in the nation and helped other states get legislation passed and yet, Utah gets nary a mention when discussing the push for legalization. It's as if...we did nothing. As much as people criticize and complain...you were NOT there talking to legislators, you were NOT there showing people your child seizing and you were NOT there crying when you had to agree to take out the help for your father who has dementia and your mother who was dying of cancer. We were. 10 hours a day, sometimes more for months. We sacrificed and where called names, told we were selfish and killing people by not fighting more. 10 hours a day! With 2 hours of drive time not to mentions meetings to numerous to count. And we didn't fight more? It's not a fight If you know that cannabis can help you, then YOU better be prepared to see it through, to call your legislator, to be polite, to put your ego aside and ask for a bill that will help you while providing as much security as possible without a price tag that is prohibitive and an infrastructure that would take almost a decade to set up. It's in YOUR hands now, what will you do with it?"

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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