After such fun holidays some topics started to show up in the news that have had me really upset. Let me emphasis that I know not everyone will agree with me. I'm okay with that! However I do want people to get all of the facts before making an opinion on medical marijuana. As most of you know Zoey's story I will just quickly review. Zoey had infantile spasms at 5 months old. After pumping some crazy meds into her (prednisilone, vigabatrin, and ACTH) we finally got that under control. As awful as those meds are, they did their job and I'm grateful for it. All though not the 75,000$ price tag on 1 vial of ACTH. Let me tell you we used more than 1 vial!
So next her seizure episodes start. No one knows what kind they are and/or what Zoey's new diagnosis is. After so many testing we still don't know. So we treat it as generalized seizures and start her on pharmaceutical seizure meds. After over a year of trying so many meds we were winding down on options. The last 2 I was given, one would cost me 500$ a month. That was with insurance. And because I had insurance I couldn't get the financial aid available. Or option 2 take this med, if she gets a rash she will die from it. Wow amazing options right? Let me also mention here that every single pharmaceutical med she has been on has had crazy side effects with it. Look up any seizure meds and most have a long list, some quite serious! Zoey walked around like a grumpy zombie. Couldn't sleep but tired all of the time. Personality was there but dim. She wasn't progressing in her learning. She wouldn't focus on people or activities she was doing.
So we as Zoey's parents did what we always do, we started looking at any other options. Things like diet changes, or surgery. Surgery wasn't an option for Zoey because her seizures occur all over. Diet wasn't working so well either. We started looking in on charlottes web. This is cbd oil. Cannabid oil from marijuana with hardly any thc( the hallucigenic part of marijuana). It is already LEGAL in Utah. Our neurologist has done paperwork to fill out and we must get a certificate and also the lab work telling all about the specific bottle of charlottes web we have. If I could show a before/after video of Zoey! All of her therapists have said how well she is focusing, learning, and how her little personality really started to come out! No it hasn't stopped her seizures. Neither did any of the pharmaceuticals she took. Only now she is enjoying her life more which means we are happier to see her happy.
Next part I want to talk about is the part that scares everyone. THC. A news article just came out saying that there were studies showing cbd oil doesn't work and causes damage to the brain. She is already having damage to her brain from the relentless seizures that I cannot stop! Also they never actually showed the study! I have found quite a few studies online showing how cbd oil has helped! 50%of seizure kids who took it saw improvement! 25% of those kids stopped having seizures all together! This is cannabis oil with different levels of thc in it. Not charlottes web. So that really makes me wonder... If I have already seen such improvements in Zoey now could this be the thing to stop all these seizures? Maybe maybe not but I sure would like to give it a chance to work! Now I'm not saying that I want full legalization, but I don't understand why someone wouldn't want to give these kids a chance. If you have never seen someone you love go though it, you wouldn't understand. Get to know us. See what we go through every day. Have you ever checked on your kid at night and thought I really hope they live through the night? I do. Every night I check on her before I go to bed and I make sure she is still breathing. I make sure that I have made her room as safe as possible, and hoping that her mattress doesn't smother her if she happens to have a seizure during the night. I'm so grateful at 6a.m. When I hear her chattering on the monitor because I know we made it through another night. I understand the fear of having another gateway drug that can lead to worse things. I understand that people will abuse even medicinal marijuana. But why can we have tobacco and alcohol which are also gateway drugs to be so easy to access and have very few if any health benefits. Ask me questions before you create an opinion that will affect my family. At least look into it and get both sides of the story before making a decision. If you want the studies I found? Ask and I will show you!
