Thursday, May 1, 2014
This is my beautiful Cameron. He is almost 6, but functions like an infant. He was not always like this. Cameron has severe Epilepsy with an undiagnosed mitochondrial disease. He used to be a strong, healthy and happy baby boy. His first seizure was right before his first birthday, and he started having hundreds daily at around 15 months old. Doctors have done extensive testing and have tried almost all available treatment options on Cameron. He has seen some of the best doctors in the country and has been to many of the best hospitals including The Cleveland Clinic, Johns Hopkins, Children’s Hospital of Pittsburgh and even The National Institutes of Health. He has a Vagal Nerve Stimulator (VNS) implant and is currently on 4 anti-seizure medications. These reduce his seizures to between 50 and 100 each day. His quality of life has decreased drastically. He can no longer do anything on his own. However, I am his mother and I KNOW he is still in there. He is trapped in this epileptic body. We are currently in the process of moving to Colorado to get him treatment from MMJ, specifically Charlotte’s Web. I, along with many other families, think it is absolutely sickening that we have to leave our family and everything we have ever known to get this for him. But, like any parent, I will go to the ends of the earth for my sweet boy.
Update March, 2013
Well, to be quite honest we have been doing what we're doing since before the hearing. I would have loved to be at the hearing, but my son is now a prisoner of the state of Colorado, aka a "marijuana refugee". Cameron and I moved here in January leaving behind my husband and the rest of our families, my home which is now up for sale, Cameron's well established support and medical system of doctors, specialists and therapists, and the town in Pennsylvania that I have called home my entire life. We couldn't wait around for the laws to change since Cameron was having at least 150 seizures each day, not to mention the subclinical ones that we can't see.
So...since January 10th, 2014 we have been giving Cameron a very low dose of Charlotte's Web. We are gradually increasing it while we very slowly wean him off one of his four pharmaceuticals meds that has failed him. I have watched his poor little body go through withdraw before this, but luckily the CW seems to lessen those effects a little. We have had some wonderful positive gains, while we don't have enough seizure control yet.
Cameron is making so much more eye contact. My husband and I noticed this almost immediately. He got to witness a few of the changes during the first week we were here while he came out to help get us set up. (He is back in PA working to keep us afloat while paying a mortgage and bills at home and renting and paying bills out here in CO.) Cameron is not only making more eye contact, but he is making longer eye contact and doing so much quicker. He is also making sounds again. These are some of the things we have watched disappear over the years. Cameron has also had some seizure reduction. This is the primary goal in all of this, of course, but the other stuff is just proof that he may be able to gain so much more from CW. His seizures have gone from 150 visible each day to around 60-75. That is greater than 50% reduction. That is with LESS of one of his pharmaceutical anti-seizure meds. And finally, the most important change to me (yes, even more important to me than seizure reduction) has been that my boy is starting to smile again. When you watch your child every minute of every day and never see a smile anymore, it slowly breaks your heart. The first smile I saw with CW that was definitely a smile and not the fake ones we have seen at the end of a seizure, brought me to tears...happy tears. So, while I sit here in my hopefully temporary home in Colorado, it is bittersweet. I am so grateful to be able to give Cam this oil that is slowly bringing him back to us, but I am alone. My husband and the rest of our family do not get to share in these little steps that I believe will eventually be bigger victories. I cannot bring Cameron home to visit my medically fragile grandparents. We are missing out on important events for family and friends. I don't have my support system around. I want to go home every single day, but I will remain strong for Cameron. He deserves this chance.
-Amy Audino Houk