What Epilepsy Means to Me: Christy Shake

Close to 3 million people in the United States and 50 million worldwide live with epilepsy and the effects of epilepsy reach more than just those who get the diagnosis. 

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?

No doubt. Calvin can't tell us but I know the meds make him dizzy and cause headaches, nausea, lack of appetite, poor coordination, lethargy, sleep problems, hyperactivity. The list goes on and on and without a cure there is no end in sight.

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

I write a daily blog to promote epilepsy advocacy: http://www.calvinsstory.com and I host a fundraiser every year benefiting the CURE foundation.

 

I HAD to get involved.

 

Robert’s Sister:  How has epilepsy affected your life?

 

Epilepsy has trumped all of the other neurological deficits that Calvin suffers from. The seizures and the drugs exacerbate all of the challenges and suffering that Calvin already endures. I worry constantly. I feel despair, frustration, exhaustion on a daily basis.

 

Robert’s Sister:  What is your favorite memory of your loved one?

 

Probably the first time I laid eyes on him in the NICU when he was six weeks early and less than a day old. I called his name, "Calvin," and he opened his eyes for the first time. But there are so many favorite memories of him, of him reaching milestones after years and years of effort, of his limitless hugs, his hearty laugh, his unconditional love.

 

Robert’s Sister:  Do you ever wish your loved one didn’t have epilepsy?

 

Of course. Always. Constantly. I think you'd be hard-pressed to meet anyone who didn't feel the same.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

That it kills more people than breast cancer, that it is not benign, that it lacks advocacy and critical funding, that there isn't a cure, that it's a life sentence for the vast majority who suffer from it because, even if meds control their seizures, they are still shackled to the side effects of those drugs.

 

Robert’s Sister:  Is there anything else you want to say?

 

I want to kick epilepsy's ass.

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

http://www.calvinsstory.com

http://www.calvinscure.com

Robert’s Sister:  Thank you, Christy!

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”   Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.