Sunday, March 23, 2014

Sweet Charlee Nelson

Sweet Charlee passed away just a couple days after the bill was passed. Although we don't personally know Charlee we have felt a connection to her and her family. My heart broke when I found out that Charlee had passed away. Charlee's disease really resembles what Leah is experiencing. When we would see pictures of Charlee we felt like she resembled Leah. One of my close friends and client is Charlee's aunt. When Charlee got sick at 3 1/2 or 4 years old, that's when Leah also got sick. My client Natalie and I would exchange stories of what Charlee was experiencing and Leah was experiencing, both were very similar. In fact, many of Natalie's family members would ask me if Leah has been tested for Batton disease. To be honest, I really have no idea if she has been tested for it. I am assuming she has been tested for it. That is something I am going to have to ask her doctors. Anyway, I followed Charlee's story for a couple of years. Always feeling very anxious to one day meet Charlee and her family. I belong to support group where we go to dinner once a month and chat. Charlee's mom belongs to the support group but because of Charlee's condition the past couple months she hasn't been able to come. We never got the chance to meet. Then finally my husband met her family at an Angels Hands Foundation family activity, it was a monster truck show. Chad took Tyler and Trent to the show and ran into Jeff (Charlee's dad), they introduced themselves and realized they went to college together. Such a small world. We wish that Charlee could've had the chance to be treated with the CBD oil before her passing so that she didn't have to suffer through all of her seizures and any pain she was experiencing. Our hearts ache for her family! Charlee was truly an angel!

We are extremely anxious to get oil for Leah right now! Leah's doctors wanted to try a new seizure medication. Well, another seizure medication on top of her phenobarbital. We have been very frustrated these past three weeks trying out this new seizure medication. It seemed like it worked for the first two days. Then she started having tons of bad seizures. Her initial dose was only .5 ml. We tried that for two weeks. Nothing changed, she continued to seize over and over. The seizures were not better,  they were by far worse being on the medication. So, we decided to up it to 1 ml like what
Dr. Filloux told us to do. Well, she went completely sedated-totally blank in the face and seizures got even worse. It was so hard to see her in this state. I cried and told Chad something was totally wrong and that we need to take her back down to .5 ml. So we keep her at that dose for another week. Seizures never got better. We both decided we gave it a good try. She is officially off the new med. Seizure medications are the devil!!! Leah desperately needs CBD oil!

When will we get the oil? Who knows!!! Hopefully we get some news soon!

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