Declan's Story

Our 10 year old son was diagnosed with epilepsy in September 2014. We had no idea he was having seizures as we had never seen one. He was diagnosed with partial complex seizures that present as Absence in the language center of the brain. We think he had been having them for at least two years prior to his diagnosis. In the nine months that followed his diagnosis, we tried four different anti-seizure medications and none worked to reduce his seizures. In fact, we felt they made him feel awful and contributed to his rise in volatile and aggressive behaviors which culminated in a six day stay in a psychiatric ward, all the while, we were utterly baffled as to what was going on with him. Two months later, we received a diagnosis of a genetic mutation called MTHFR, which obstructs his methylation, which is why the anti-seizure medications had the awful reaction they did. He also has autism and speech apraxia diagnoses, OCD, incredible anxiety and doesn’t sleep well. 

 

We started our son on CBD oil in June 2015 after seeing a special on TV. It seemed to work the first six weeks and then it didn’t work. We gave it six months before we switched oils. 

 

. Aside from the stellar presenters and booths with a wealth of information, we met an incredible mom (Sharon C.) who is so Epilepsy Awareness Day at Disneyland at the Paradise Pier HotelWe discovered Elysium at the knowledgable about CBD oil and shared her journey with her daughter. Her in depth knowledge of how it works, it’s affect on her daughter and other people was inspiring for us. She told us that she and Paul and other parents would be available to help us throughout the journey of taking CBD oil. We started our son on Elysium in January of 2016 and the change has been astounding. 

 

The CBD has helped with his seizures, as noted in an EEG done in March 2016. He went from 16 seizures in January 2015 to three seizures 14 months later. Paul, however, did not find that as fabulous as I did and said we needed to try a THC boost to cut those seizures. At this point, we were starting to see the seizures. He would kick his legs out, his hands would twitch and one time he arched his back. We were terrified as the ones he did have were getting worse. We gradually titrated up the THC boost and wouldn’t you know it, the seizures that we noticed at night seemed to stop. We won’t know for certain until his neurologist orders another EEG, but he is sleeping through the night much better and we all know the benefits of sound, uninterrupted sleep. The THC Boost was the final bump in the right direction to help our son. We also haven’t noticed any symptoms that indicate seizures. When our son was going through the hardest time with his seizures and medications, he stopped skateboarding and had absolutely no interest in it. He actually couldn’t stay on the board. He has incredible balance and core strength so this was devastating. Within two months of being on Elysium, he was back to skating, trying new things, and so much happier. Skating also helps with his inability to methylate. 

 

We have had to make adjustments to our doses as we have gone through the flu and bronchitis this summer. During those times, we stopped the CBD and THC boost for a “restart.” We stopped all doses for three days and then started with very low doses and worked our way up, adding the THC boost along the way. 

 

Aside from the seizures stopping, we have noticed so may other changes with our son. He has a handle on his OCD and his anxiety has lessened quite a bit, although he is still fearful of new environments. His eye contact and engagement with people is incredible. He loves to be included in conversations, he participates in all family activities in ways he hadn’t done before, he has chores, he is able to navigate through his ProLoQuo on his iPad much more effectively and his motor planning and memorization is increasing. His speech therapist and behavioral therapists all noticed differences as well. He has increased his speech production, we understand a lot more of what he is saying and trying to say, his confidence in speaking has greatly increased and his use of the iPad for communication has increased tremendously. His behavioral therapists have gotten a much better handle on his behaviors as well. He responds more to verbal directives for reducing behaviors as well as calming down when he is escalated. It is clear he doesn’t like it when he is escalated and while it still happens, he’s not tearing door frames off or breaking windows and TVs. We used to have upwards of seven tantrums and meltdowns a day that lasted up to 45 minutes each when he was taking pharmaceuticals for his seizures. Now we have about two to five a week and they last anywhere from seconds to 15 minutes. Further, the purpose has shifted. It’s not because he feels physically bad, it’s because he is frustrated with his lack of ability to communicate effectively and he is really trying to get a point across, or we forgot something.  And he is trying to calm himself and stop the tantrum whereas before, he was just consumed by them. 

 

Paul and other parents have been an excellent resource for our family. We have learned so much and continue to learn so much. Everyone is a phone call and text away from helping. It’s humbling that so many given so much to us.

 

We are now trying new programs for speech and ABA. I don’t have to hire a babysitter for going to the grocery store or taking someone to soccer practice, I don’t have the fear of what a tantrum will bring. My husband is a fireman and he doesn’t fear leaving me at home with our son so he can go to work. The quality of life for our family and particularly for our son, has increased substantially. We know this is a journey of scribbles, twists, turns, backtracking and spinning in circles, but we are moving forward now and that’s a great thing. We are eternally grateful to Paul and all the parents that have helped us along the way and will continue to do so as I lob questions as how to best help Declan.

Cannavalon Biosciences, Inc.  Santa Rosa, California 

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