Austin had his first seizure at four months old. What appeared at first to be a hypermoro reflex turned into him having more than 12 episodes of his whole body jerking and his eyes open and staring in 12 hours,lead us to believe he was really having seizures. The following day an EEG was performed and indeed he was having seizures. We began mediation that for the next two months seemed to control his seizures and then the seizure pattern changed and he began having more of a tonic/clonic generalized seizure. Most of Austin’s seizures happen when he is going to sleep, during sleep and upon waking up in the morning. Because of this he cannot sleep alone or he would try to get to someone and hurt himself, therefore he has to sleep with a member of our family at all times.
Since four months of age Austin has never been completely controlled and has been on approximately 10 different medications, including ACTH injections daily at nine months old for 30 days, and the placement of a Vagus Nerve Stimulator (VNS) in 2001. Even with all of these treatments we have not been able to help him be completely seizure free. Many of these medications are given together in hopes of control. Currently, Austin takes three different seizure medications and recently had to weaning off of one due to the side effects that caused a severe tremor in his hands, much like that of a Parkinson’s patient, this tremor was preventing him from performing normal tasks such as feeding himself and getting dressed. Austin has had up to as many as 10-15 seizures in a day and currently is having anywhere from 18 per day. His seizures typically last around 30sec. to 3 minutes, causing total body shaking, eyes opening staring or eye fluttering, gurgling noises, and sometimes he tries to climb out of bed.
Austin started showing development delays around the age of two and has continued to have delays throughout his life. He has speech, fine motor, and academic delays; he has been classified as Intellectually Disabled. He is 20 years old and academically functions at about a 45 year old and socially about a 12-14 year old. He also has a diagnosis of ADHD and Anxiety, both requiring medications. He also needs medications to help him sleep at night.
Even with all of Austin’s epilepsy and developmental delays he loves unconditionally and has more friends then most of us!
Our hope for Austin’s future with the use of Cannabis Oil is for him to have a decrease in seizures and to have an increase in his cognitive abilities, giving him a better quality of life!