Epilepsy Awareness Month: Follow-up Interview with Christy Shake

Christy is one of those people who when told “no” will find a way anyway with or without help. If her son, Calvin, needs something to improve his care and his health, she will find a way to get it for him. She will do her own research, organize fundraisers and is absolutely relentless and tireless in her advocacy.

Christy Shake with her son, Calvin

I know Christy through her blog, Calvin’s Story, from our previous interview in 2012 as well as other social media and occasional email exchanges and her resolve to help her son is evident through everything.

I also know that just because we are caregivers, life does not stop. Our routine cannot stop because an election does not go our way. We do not get a pass on other crap that might be thrown our way just because we are caring for someone. Christy is no different and, as just one example of how cruel the Universe can be, Christy lost her mom last year to Alzheimer’s.

Through everything, I know Christy is tough and, oh (!) so smart, open and honest about the struggles of caring for a boy with significant health issues.

Christy was kind enough to talk with me again and to share how life with epilepsy has changed for her family over the last four years.

Robert’s Sister:   I interviewed you in November 2012 and I am curious what changes have occurred in the last four years.  Please remind us how epilepsy has affected your life.

In February of 2014, I began treating my twelve-year-old son Calvin’s epilepsy with a homemade THCA cannabis oil, a boy who, in the ten years since his diagnosis, had failed as many antiepileptic drugs. At the time we added the cannabis oil to his regimen, he was taking high doses of two pharmaceutical drugs, Keppra and Onfi, a benzodiazepine. We decided to wean the benzodiazepine because Calvin’s behavior had become intolerable; he screamed and flailed much of the time and didn’t sleep well at all. It was clear to us it was due to the drugs.

Robert’s Sister: What is the most significant change in your life since our last interview?

The most significant change is the virtual disappearance of daytime tonic-clonic seizures. Since adding THCA cannabis oil to Calvin’s regimen two-and-a-half years ago, he has had only two daytime grand mal seizures. The initiation of a four p.m. dose of oil has eliminated his frequent early evening grand mal seizures, an improvement which has greatly reduced the anxiety I feel around his safety. Prior to adding that dose, Calvin used to have seizures every week or two in the bath or at dinner. As a result, I was constantly looking over my shoulder fearing the next seizure. Now, his grand mal seizures are confined to the predawn hours when he is nearby and safe in his bed.

Robert’s Sister: Has the treatment changed for Calvin?

We have been weaning Calvin off of his benzodiazepine since starting the cannabis oil regimen. Over the past two-and-a-half years we have taken him from 35 mgs/day down to 3 mgs/day with just a fraction of an uptick in grand mal seizures plus a smattering of partial seizures each month. We have also taken him off of Miralax, Banzel and several other topical medications used to treat a persistent chin rash due to the excessive drooling benzodiazepine can cause. In lieu of Miralax, we have been giving Calvin probiotics which have helped boost his immune system while improving the flora in his gut.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

Since the advent of the cannabis oil, in concert with the reduction of the benzo, Calvin is far calmer. He will now tolerate sitting in our laps. He sleeps far sounder and longer. For the most part, he seems to have less trouble with painful gas. His bouts of hyperactivity are few and far between. He has become slightly better at expressing his needs through gesture (he is non-verbal). The past year, however, he has become more stubborn in ways, but that could be attributed to the benzodiazepine withdrawal or the slight increase in seizure activity.

Robert’s Sister: What caregiving help do you use?

We used to have a nurse assist us up to eighteen hours per week but she moved out of country and we have not been able to secure a replacement. We don’t live near family and none of our friends are truly capable of taking care of a boy as complex and needy as Calvin. Sometimes we use his former ed tech to watch him if there is a function we need to attend. Mostly, though, I take care of Calvin when he is not in school. My husband works most days, but he also does all the cooking, freeing me up to take care of Calvin, who is hands-on since his balance, vision and cognition are so poor.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?  

In many ways life has improved but in others it has not. Calvin’s improved behavior, since drastically reducing his benzodiazepine and adding cannabis oil, has eased much of the distress and frustration we used to feel. The uptick in partial seizures, however, has taken its toll in that Calvin is missing a lot of school as a result, which means keeping him home and caring for him mostly by myself. Our boy needs assistance around the clock and can never be left unattended since his balance is so poor that he is liable to get hurt.

I definitely feel the cumulative psychological, emotional and physical effects of caring for a significantly disabled child with a chronic illness.

Robert’s Sister: What has been your favorite moment these last four years? 

I can’t isolate a favorite moment, but Calvin has reached a few milestones in the past four years that have cheered me. He has learned to sign four words: hug, more, eat and all done. We gladly retired his safety harness two years ago since his walking and balance improved so much. He goes shopping with me and seems happier riding in the car. He is calm enough now to sit on our laps again while we read him his favorite book. We see fleeting glimpses of a more “normal” boy.

Robert’s Sister: What do you see for yourself or your loved one in the next four years?

I wish I could say that I foresee a life without seizures and drugs, but my sense is that Calvin will likely continue to have seizures since he has failed nine antiepileptic medications, and the cannabis, so far, hasn’t eradicated his seizures either. Having said that, I do believe he will continue to make strides in his development, and I hope that this stubborn streak will soon subside.

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

I invite you to visit my blog at http://www.calvinsstory.com.

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

Please donate to CURE Epilepsy in honor of Calvin at: http://www.calvinscure.com.

I am extremely grateful to Christy for taking the time to update us on her story of caring for Calvin. She is a remarkable mom and I implore you to read her blog. It is a testament to the resilience and strength of a mom caring for a child under extraordinarily difficult circumstances. It helps that Christy is a gifted writer who shares her story in rich detail and often-times gut-wrenching anguish.

Many thanks and heartfelt hugs to Christy.

Trish

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.