November is Epilepsy Awareness Month and we are meeting some of those people affected by epilepsy.
This month is about seeing how epilepsy has affected the lives of not only those living with epilepsy but the parents of children with epilepsy and the children growing up with a parent who has epilepsy. Epilepsy affects people who have a sibling with epilepsy. Epilepsy has inspired people to start non-profit organizations and has affected those who are friends with someone with epilepsy or who have married into a family with someone diagnosed with epilepsy.
|Christy and Calvin|
Starting our series of interviews this month for Epilepsy Awareness is Christy Shake whose son, Calvin, has epilepsy. I met Christy through her daily blog where she writes about her son. It is honest, gut-wrenching, profound and deeply touching. Writing about Calvin every day lets her readers see every emotion a parent could possibly experience.
Robert’s Sister: When was your loved one first diagnosed?
Calvin was diagnosed when he was two years old.
Robert’s Sister: Tell us about the process of getting the diagnosis.
Calvin had had two febrile seizures as the result of urinary tract infections. Then six months later on a flight home from Florida he vomited on the plane. I thought he was airsick. But at home it continued, though I thought it unusual that he wasn't crying. I was suspicious. Then he went into a grand mal seizure that landed us in the ER. His clusters of seizures continued and the doctors performed an emergency intubation without anesthesia and Calvin screamed in pain while we watched, helplessly, not knowing at the time what we should do or how we could advocate for our boy. Hours later they performed a short EEG and gave us the diagnosis, plus a prescription for Trileptal. The neurologist mistakenly gave Calvin twice the dose he required for his weight. We discovered the oversight and told the nurses. The neurologist ordered the dose to be cut in half, with no admission of fault. Calvin went nuts on the drug and we changed to Keppra a few days later.
Robert’s Sister: How did you feel when your loved one was first diagnosed with epilepsy?
I didn't know what it meant, exactly. I thought it was a benign condition where you take a pill and everything is okay. I didn't know there would be years of suffering, heinous treatments and their side effects, I didn't know that seizures can be uncontrollable, I didn't know people died from epilepsy.
Robert’s Sister: Did your family treat your loved one differently after the diagnosis? If so, how so?
My husband and I worried more. A lot more. But we didn't treat Calvin differently.
Robert’s Sister: Did the kids at school treat your loved one differently because they had epilepsy?
Hard to tell. Calvin is such a different little kid because of his other neurological impairments. He cannot walk unassisted, can't talk and remains in diapers although he is eight years old. The kids in his mainstream class seem to embrace him.
Robert’s Sister: What treatments has your loved one tried? What has worked? What hasn’t worked?
Calvin has been on Trileptal, Keppra, Depakote, Lamictal, Clonazepam, Zonegran, Clobazam, Banzel, Neurontin and Keppra again. He's tried the Ketogenic diet and the Low Glycemic Index Treatment. Clobazam and his second course of Keppra have worked the best though he still has seizures. The Ketogenic diet didn't make a dent. The Keppra makes him manic and dampens his appetite. He's been on as many as four antiepileptic drugs at once. Some have caused him to lose skills and be a zombie, others cause him to be completely hyperactive.
Robert’s Sister: Do you think the medications affect how your loved one feels?
Robert’s Sister: Thank you, Christy!