Making THCa At Home: An Interview with a Mother

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Christy Shake is a 52-year old woman with the lean lines of a life-long swimmer. Competitive since childhood, she doesn’t have much time for swimming these days as her hours are spent mainly taking care of and advocating for her severely disabled 12-year old son Calvin. Christy and her husband Michael live in Maine, where he teaches photography at a prestigious college and she takes care of Calvin and now makes his cannabis medicine. She also writes regularly about her life with Calvin at Calvin’s Story.

I spoke to Christy over the telephone last week on a snowy day in Maine, during one of the free hours she has when Calvin is able to go to school.

 

Photo by Michael Kolster

Photo by Michael Kolster

 

INTERVIEWER

Hi, Christy! Thanks so much for sharing your story with us. Tell me a little about Calvin and his history.

CHRISTY

Sure. Before Calvin was born, we knew he had a brain abnormality. He was diagnosed, using sonograms and a fetal MRI, with ventriculomegaly. That’s enlarged ventricles in the brain and a significant absence of its white matter. After he was born, we weren’t sure that he’d survive. He spent his first couple of months in two different hospitals as they stabilized his vitals.

INTERVIEWER

That must have been so scary for you and Michael.

 

CHRISTY

Yes, it was. Michael didn’t have parental leave, so he did a lot of commuting. We tried to stay close to Calvin and slept at the Ronald McDonald house, and then I moved into Calvin’s hospital room. Michael came in at night after working all day, and sometimes he’d stay on a cot in the room. It was a really stressful time, but to tell you the truth, it became even more stressful once we were home.

 

INTERVIEWER

Why is that?

 

CHRISTY

Well, it soon became clear that Calvin’s problems were intense. The doctors told us that he might never walk or talk or even crawl. Not only did he have the brain malformation but other developmental delays and disabilities. He has significant cerebral and ocular visual impairments, hypothyroidism and PDD-NOS. He couldn’t hold his head up, and all the other kids his age and younger were rocketing past him. We thought all of that was bad enough, but then the seizures started and epilepsy made all his other disabilities combined feel like a cakewalk.

 

INTERVIEWER

I know that Calvin walks today because of his pictures that you include on your website. Does he talk?

 

CHRISTY

Yeah – Calvin proved the doctors wrong and can walk pretty well, although the drugs they’ve had him on make it very difficult for him. He doesn’t talk, though he is starting to use some signs for simple communication. I really think the drugs that he’s been given for so many years to control his seizures have inhibited much of his development. He was beginning to babble when he was eighteen months old, but then the seizures started and the drugs started and the babbling stopped.

 

INTERVIEWER

So tell me a little about the seizures. When did they start?

 

photo by Michael Kolster

photo by Michael Kolster

CHRISTY

Well, Calvin was about eighteen months old when he had his first seizure. All they found on his EEG, though, were abnormal sleep spindles. Both of the seizures that he had were febrile and caused by urinary tract infections. Just after the age of two, though, he had a grand mal, or tonic-clonic, seizure that lasted 20 minutes. He was intubated in the emergency room and then officially diagnosed with epilepsy. It was beyond awful.

 

INTERVIEWER

I can imagine how horrible that must have been, especially given all the other medical things he, you and Michael had endured.

CHRISTY

Yeah. He was put on medication for the seizures immediately. It was a drug called Trileptal, and Calvin basically went nuts on it. We knew something was wrong, and it turned out that he had been given an adult dose – more than twice the amount of drug he was supposed to get. The neurologist at the hospital never apologized. He just cut the dose by 40%.

 

INTERVIEWER

I bet that didn’t instill much confidence in the system for you, did it?

 

CHRISTY

No. And it was only the beginning. When Calvin was released from the hospital, his pediatric neurologist took him off the Trileptal and put him on Keppra, but Calvin continued to seize. We learned that after the first one or two failed drugs, the chance that another one would work was not very good. We went through nine or ten different ones, but all of them had hideous side effects and nothing put a dent in his seizures. I was just sick and tired of the drugs.

 

photo by Michael Kolster

photo by Michael Kolster

 

INTERVIEWER

So, I’m assuming years went by and Calvin’s seizures were refractory to medication. When did you first start hearing about cannabis medicine?

 

CHRISTY

I did start researching other forms of therapy for Calvin, and I came across the story of Paige and Charlotte Figi and thought, wow, I want to try cannabis for Calvin! I first asked Calvin’s neurologist if she would recommend it, but she was pretty emphatically opposed. She claimed that there were no studies of the efficacy or safety of cannabis. We changed neurologists, and the new one said the same thing.

 

INTERVIEWER

I hear that’s the “party line.”

 

CHRISTY

Yeah. In the meantime, I got in touch with Paige Figi and talked to her and to her people, basically asking them for advice. Her assistant said that we should try ACDC, R4 or Harlequin strains, so I started investigating what was going on in Maine as far as medical marijuana. I learned pretty quickly that there were no high CBD strains in the state.

 

INTERVIEWER

Frustrating, I’m sure – but you were determined, I imagine?

 

CHRISTY

Oh, yes. Anything was preferable to what was going on with Calvin – seizures all the time, horrible behavioral side effects from the drugs. It was a continuous nightmare. I came across Dave Mapes online and learned that THCa was really happening in Australia and Canada, partly because those places didn’t have the high CBD strain either. I thought, well, I can’t get CBD yet, so maybe I’ll call Dave and learn what I can. THCa is non-psychoactive, and I really wanted to try it with Calvin. His recipe for THCa was online, so I started thinking…

 

INTERVIEWER

That seems like an incredible goal – to learn how to make cannabis medicine yourself!

 

CHRISTY

Yeah. At first I was intimidated. I called Dave and asked him hundreds of questions. He coached me, basically held my hand. At the same time, another mother in Maine was also beginning to make oils. We hooked up with each other, and she showed me her tools and a little bit of what she was doing. I felt slightly more comfortable.

 

INTERVIEWER

So, what are the laws in Maine and did you know what they were before starting?

 

CHRISTY

Yes. We’d had legal medical marijuana in Maine for about ten years, and epilepsy was on the list of treatable conditions. Our pediatrician issued the certificate and persuaded the neurologist to recommend it as well. That part was not a problem. What was a problem was that at the same time, someone introduced a bill into the Maine congress outlawing kief. Kief is the medicinal component of cannabis that is extracted to make concentrated medicine. It’s basically what people were blowing up their kitchens in Colorado — trying to extract using butane. I think that’s why Maine wanted to outlaw it.

 

INTERVIEWER

So, a setback legally?

CHRISTY

Yeah. I spent a lot of time writing to legislators explaining the extraction process and appearing at a hearing. I was the first of several parents who argued against outlawing kief.

 

INTERVIEWER

Wow. How’d you do that?

CHRISTY

Well, I testified about why they needed to take that language about banning kief out of the bill. They didn’t really understand that if they did that – banned it – I wouldn’t be able to make or give my son medicine. He needed to have an edible oil that could be precisely measured and incrementally increased and decreased as necessary.

 

INTERVIEWER

So what happened?

 

CHRISTY

Well, they changed the language from kief to hash, and then I had to write another letter saying that kief and hash are essentially the same thing. We’re talking about the medicinal properties of the plant. They wanted to ban the extraction of it!

 

INTERVIEWER

And you had to extract it to give it to Calvin, right?

 

CHRISTY

Exactly! He certainly can’t smoke a joint. They probably didn’t realize what they were doing, but they ended up striking the language from the bill.

 

INTERVIEWER

And onward –

 

CHRISTY

Yes! That was right before I was going to make my first batch of THCa. I’d also had hours and hours of conversation with a woman who owns a medical marijuana dispensary. She said that she didn’t have a high CBD strain, but she did have a high THC strain. I decided to then go with a dispensary instead of a caregiver because I wanted the product to be consistent and grown indoors.

 

INTERVIEWER

Why is that? What do you mean?

 

CHRISTY

Well, I’d researched enough to know that this dispensary harvested bud consistently, on regular intervals, under the same conditions every day. Her team wears scrubs and are highly antiseptic. She had her shit together, basically. I could tell. I had confidence in her.

 

INTERVIEWER

Did you have any other concerns at first about the supply?

 

CHRISTY

Yes. We decided to use a strain that was popular in her dispensary and that she’d keep in stock. I was worried about the supply chain – what if a pest destroyed all of their bud? What if a crop failed? I also wanted to find as much consistency for Calvin as I could and know that it was as safe from pesticides as it could be.

 

INTERVIEWER

So, you’ve got your supply and your recipe. What next?

 

CHRISTY

C: I ordered all the tools I needed, the organic alcohol and some MCT oil. It was expensive – I probably spent several hundred dollars to get what I needed. Next, I bought the bud and went about making it.

 

INTERVIEWER

Tell me a little more about that day.

 

CHRISTY

Well, it was February, almost exactly two years ago. It was really cold outside, and I’m inside. The first thing I learned is that you have to sterilize the equipment, and I was boiling it. It’s stupid to boil things – I figured out that steaming is much easier. I was so afraid of contaminating it that first time, getting my fingers in it. Today, I’m a little more cavalier, but I use the same recipe and steps. Dave Mape’s recipe calls for multiple sterilizations, but as a parent, I do what makes me feel comfortable.

 

INTERVIEWER

How long did it take you to make your first batch?

 

CHRISTY

Well, there’s waiting between each step, so it took a good week to actually make it. I was alone doing it, except for the resin scraping part. My husband wanted to help, but I felt like I needed to do it on my own. I felt distracted having anyone watching, really. I do it alone.

 

INTERVIEWER

What kind of challenges did you have?

 

CHRISTY

The part that takes the longest is the resin dissolving into the oil. You add the oil to it after the alcohol is evaporated off, and you let it sit and dissolve. It’s so goddamned sticky. Like amber, like hard sap. It’d be like an old Jolly Rancher – imagine how long it’d take for bits of a Jolly Rancher to dissolve in oil.

 

INTERVIEWER

I figure you learned some tricks along the way?

 

CHRISTY

I learned from another mother making the oil to add 1 ml of MCT oil to the alcohol mixture. Because alcohol and oil don’t repel one another like water and oil do, the oil dissolves when you shake it up. Once it’s evaporated, the resin is more fluid than if you hadn’t added the oil. It’s easier to work with.

 

INTERVIEWER

What a relief! So tell me about your first batch of oil.

 

CHRISTY

My first batch  yielded about 4.5 grams of resin – which gave me about 4 ½ oz of oil. The bud is about $300 for an ounce, and that’s what you start with –

 

photo by Christy Shake

photo by Christy Shake

 

INTERVIEWER

How did you figure out how to dose Calvin?

 

CHRISTY

I went by Dave’s conservative dosing recommendations. He had been making herbal tinctures for years before going with cannabis and was already treating kids with epilepsy, so I trusted him. He suggests starting with 1 drop, once a day increasing to 1 drop, twice a day and so on. Dave prefers dosing close together as opposed to further apart, but I knew right away that we had to maintain a certain quality of life and giving Calvin the medicine every three hours was not feasible. I also knew that the smaller amount wasn’t going to cut it, so I started with 3 drops and moved up from there.

 

INTERVIEWER

A lot of parents giving cannabis oil report that dosing can be tricky and that there is a lot of tinkering to do.

 

CHRISTY

That’s absolutely right. At some point I realized that the oil probably has a half life, and Calvin‘s seizures were always between 5 and 6:30 p.m. I thought, why don’t I give him some at 4 pm? After adding that dose, Calvin’s daytime seizures virtually disappeared. It’s been over 500 days since that day, and he’s only had one daytime grand mal seizure since.

 

INTERVIEWER

Wow. That’s fantastic! Is he seizure free, then?

 

CHRISTY

No. It seems they’ve migrated to the night. I really can’t give him the oil at night because he might aspirate. I also wanted to devise a regimen that was doable, longterm, for everyone, and giving the oil at night would be too disruptive. I chose instead to double his nighttime dose, and that seems to have helped. Before I did that, though, I’d draw up a nighttime dose, and if he woke up before midnight, I’d give him an extra dose if I sensed a seizure coming. Lately, his seizures are less predictable.

 

INTERVIEWER

What other tinkering have you done?

 

CHRISTY

Well, we tinkered and adjusted the THCa for about a year, and then we decided to give him CBD to see if we could eliminate his nighttime seizures. We started with a dispensary strain – ACDC – but nothing really changed for him. We’ve kept him on it, though, because of its other positive qualities.

 

INTERVIEWER

What else could you tell us about the effects of the THCa on Calvin’s life?

 

CHRISTY

What I’ve really enjoyed seeing the most, other than a virtual elimination in daytime seizures, is Calvin’s changes as he comes off of the powerful drugs he’s been on. He’s completely off of one of his three pharmaceuticals and almost off of another, a benzodiazepine called clobazam, aka Onfi. There’s no way of knowing this, but I believe he’d be suffering from way more withdrawal side effects without the cannabis. As you know, weaning from a benzodiazepine is really horrible, and while Calvin’s grand mal seizures continue, they are few, and he’s on 90% less benzo than he was two years ago.

 

INTERVIEWER

What are some of the other effects you’ve seen?

 

CHRISTY

He’s walking without a safety harness. He’s way calmer today. He didn’t used to let us read to him or hold him in our laps, but now he does. He can sign four words now, and they’ve all developed since weaning him from the benzo. He sleeps through the night and is happier. He’s essentially not having seizures during the day. He’s safer. We don’t have to lift him seizing from the bathtub or worry about him having a prolonged one at school.

 

photo by Michael Kolster

photo by Michael Kolster

 

INTERVIEWER

Thank you so much, Christy, for sharing Calvin’s story and your journey to make him cannabis medicine. Do you have any other advice?

 

CHRISTY

You can find the recipe I use to make Calvin’s oil on my website Calvin’s Story, but I highly recommend that you study the original recipe which is downloadable from Epsilon Apothecaries. You’ll find links on my site, as well, to purchase some of the items that you’ll need. Many of them, though, are available at your local hardware or kitchen store. Good luck!

About Author

Elizabeth is a writer living in Los Angeles with her three children. Her work has been published in numerous literary anthologies and journals as well as The Los Angeles Times, and Spirituality and Health Magazine. She received a prestigious writing residency at Hedgebrook on Whidbey Island and is currently working on a memoir about the challenges and joys of raising a child with significant disabilities. She is intimately and passionately acquainted with medical cannabis as it dramatically reduced her daughter's previously uncontrolled seizures. She blogs daily at www.elizabethaquino.blogspot.com. In her vast amounts of free time, she also wrangles two teenaged boys and attends a bewildering number of sports practices and games.

12 Comments

  1. Christy is a perfect example of the kind of person who sets their mind to the task and just gets it done come hell or high water. I was proud to help her and hope that her story inspires people to realize something very important…

    There’s far more options that exist with using cannabis therapeutically than simply relying on CBD or even just THCa or THC. The reality is there’s a whole world of possibilities. It just takes a little legwork and asking lots of questions!

  2. rebecca loudon on

    Thank you for keeping this conversation going Elizabeth. And thank you Christy for your bravery and pioneering fortitude. My heart is pried open by you and Calvin.
    Rebecca Loudon

  3. Allison Ray Benavides on

    I love this story because it not only provides hope it provides empowerment. I’ve made THCA and can tell you it’s super easy!! Anyone can do this. Between the amazing Dave’s recipe and support from super moms like Christy, we can heal our own children. How beautiful is that?! Thank you so much for sharing xo

  4. Whenever I feel like I am losing hope I reach out and read stuff like this. I am faced with the choice of either hoping that OH gets their laws in order soon or ignoring them and proceeding as best as I can with my son.

    Always liked this interview, E

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