Wednesday, November 9, 2016

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

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:

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.


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