New info!

Finally I have some news to update everyone! We got the results back from Zoey's Rett genetics test and it came back negative!! While I'm so happy that I don't have to worry about that particularly bad diagnosis we still don't know why Zoey has to have these nasty seizures. 

We had a friend who gave us information to see a new neurologist who ended up being Zoeys original doctor at primary's! We met with him this week and finally got a little more detail about what is going on with Zoey and where she is at. I'm happy to report that everything we have tried up to this point is exactly what we should have been doing. However, he was able to explain things to me that were a little more user friendly to understand. I showed him videos of my Zoeys seizures and he new exactly what kind they were. First time I have had a name to her seizures. Myoclonic. Then he was able to tell me right away that of course Zoeys doesn't have Rett syndrome, wish we could have that information before we spent so much money on genetics and travel, but nice to have yet another person validate she doesn't have it. 

The bad news we received was that Zoeys types of difficult seizures, being myoclonic and having been diagnosed with LGS, we were at a 3-5% chance of gaining total control of her seizures. Not what we wanted to hear. I wanted them to stop and see if we could get her to learn and grow without seizures interrupting things. We also had only a 20-30% of gaining some control with meds. So not great news, but we really don't have much choice so on we go. I was also able to understand more about the scary rash medicine that I have been putting off for months. Turns out once explained, yes it can be a problem, but not nearly as bad as what I was originally thinking. Back on meds my Zoey goes. Not too happy to have her back on the pharmaceuticals, but charlottes web (CBd oil) just isn't cutting it. It has helped in so many ways, helping her focus, being happy and playful, and finally learning things again, but not helping the seizures. Our plan is to continue doing CW until the new med is in full effect ,somewhere around July, then take her off. We will see if there is any difference in behavior and personality, if no we will be done with it. If however, we do think it helped we will switch to Hayley's hope. Another form of CBD oil. If we have luck with this medicine then yay! If not, we will hopefully have more leverage to get my insurance to cover some of these other meds. For now I am feeling like we are back into action. It's been an awful few months watching her scream in pain 3-4 times a day suffering with her seizures and if I can give her even a few days break from them I will take it! Keep Zoey in your thoughts and prayers, and we will keep fighting for our baby girl ;)

Touchy subject

It has been a really long time since I have updated! December is always busy and with both my kids birthdays squished in there too, it makes it all the more rushed! We had a great Christmas and as always children and the earth gave us a fantastic Christmas for the kids! Warm clothes and shoes, toys and candy too! What giving people we have in this beautiful state! 

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!