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The Eight-Year-Old Epilepsy Warrior

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kara3Photos by Madison Ortiz

Kara is an eight-year-old epilepsy warrior from Michigan who has legally been medicating with cannabis for just over two years. Krista, Kara’s mother, talked with us without skipping a beat, “She’s not cognitively impaired but she’s classified as otherwise health impaired. Though she’s in second grade, she has the maturity level of a kindergartner.” Kara’s Dad David chimed in, “We’re still trying to figure out what’s going on inside her brain.” Kara’s parents aren’t entirely sure if the development issues are more attributed to the seizures or the cocktail of medications that have made their way through her body. Despite being a bit behind other kids her age, Kara’s spirit and soul shine brighter than bright.

At eight months old Kara had her first febrile seizure and at 22 months. Her current diagnosis is “Generalized Epilepsy with Febrile Seizures Plus,” but she’s a bit of a specialized mystery case as many of her critical tests (PET, MRI, CAT) show results that don’t line up. The frequency of her seizures is regular, occurring about every one-and-a-half to two weeks. Prior to cannabis, they lasted a minimum of four but up to nine minutes. After cannabis was introduced to her medication regiment they are typically a minute or less; the longest ever while medicating with cannabis being three minutes.

Kara’s history with pharmaceuticals is not an uncommon story for epilepsy warriors, filled with additions and subtractions of varied substances to find just the right fit. Doctors started Kara on Trileptal, added Keppra added Onfi (which she is still on). Trileptal and then Keppra were weened, when a “thick disgusting cherry flavored” Depakote was added. Additionally Zonegran was added. At three years old, Kara was forced to receive blood draws every few weeks to check her platelet levels. Both parents agreed, “Her personality, appetite, everything changed. She wasn’t eating, wouldn’t get off the couch, she was pale, and would bruise really easily.” She was cut ‘cold-turkey’ off of Depakote after tests alerted them of an alarming platelet count of 60,000 (normal range is 150,000 – 450,000). “She almost died because of what Depakote put her body through. They have to actually check the levels of this medicine in your blood because it is toxic is if builds up in your system.” Mom and Dad hope to one day eliminate all pharmaceuticals for their daughter. For the past two years, Kara has been legally using cannabis oil in addition to her prescribed pharmaceutical regiment. Since Kara’s success with cannabis oil, the rescue medication Klonopin is rarely used because cannabis has shortened the length of time she seizes for.

Regarding Kara’s cannabis related regiment (at 50 lbs) she receives 18:1 CBD:THC tincture 3x a day, 1:1 3x a day, and RSO 2x a day (just not before school). Dad explains, “The reason we mix in THC is  because I really feel you need full spectrum of cannabinoids, an entourage of effects, so to speak. I mean CBD for some people is in it of itself enough but for her, I really feel she needs more.”

Her medicine comes in fractionated coconut oil; liquid form. A syringe with a bottle; same type of thing was you’d figure out dosage with other medicines for children; by weight. “She loves her medicine, she’s definitely my kid,” Dad says proudly. “She gets her syringe and I say “here Kara its time for your ‘green medicine’.” Getting her to take medicine has never been an issue. You can give her two pills tell her to take them, she takes them; give her a syringe she sucks it down; but with ‘green medicine’ she sucks it down and pulls the syringe out and walks around sucking on the tube cause she likes it so much.” He reminds me that “she’s totally clueless to what it is. She’s such a little girl.” Though she is starting to have awareness of her Epilepsy, as she’ll remind Dad when she wakes up from a recovery nap “Daddy, I had a seizure”. With good humor he briefly chuckles, “sometimes she gets a little stoned. (Obviously I’m not trying to get her stoned.) But she’ll get a little squinty-eyed before bedtime and starts giggling, I’ll ask “how do you feel” and she giggles back “I feel funny”.” A child feeling stoned may be appalling to some who are oblivious to what an obstacle this family is truly overcoming, but as a parent familiar with any kind of journey similar to Kara’s, this reaction is bliss in comparison to the awful harmful reactions that pharmaceuticals have had on their child in the past.

With Kara being the youngest MMMP that I’ve personally ever met, I was incredibly curious about what the process was like for an eight year old to obtain a legal medical marijuana license. Dad explained that “you need two doctors to get a minors (medical card). We’ve helped (the families of) several minors (get their cards).” His advice to other families with desire to help a patient who is a minor, “If you can, try to get a family doctor on board that is willing to recommend cannabis,” providing one of the two required signatures.

Initially upon discussion with their doctor, formerly the head of Pediatrics at Children’s Hospital, there was repetitive resistance. Their doctor expressed that he had seen people starting to use it, but said things such as “I don’t know if it would be good in her instance,” or “I don’t prescribe it.” Persistent, as any parent would be in their scenario, they patiently waited to bring it up again at their next visit. Kara’s parents knew they were going to need to help educate this extremely well educated and respected man about cannabis when he exclaimed “THC isn’t what she needs!” When Dad replied with “No, CBD”; he clearly didn’t know what CBD was. Though filled with kindness, doc was still not super responsive to their request.

kara1

The turning point, was when Kara was brought to the ICU following a 40 minute long seizure. She was given so many Benzodiazepines in the ICU that she wasn’t able to breathe and they were gonna have intubate her to help her breathe. Kara’s Dad said “It was getting super critical. We were super scared. Thankfully, she came out of it. I then told my wife that when the doctor made his rounds the next day that they weren’t taking no for an answer (in regards to getting him on board with signing off on Kara’s cannabis treatment). That was the best moment ever, really; to get that signature.”

After getting that signature though, many families don’t know where to turn to next. Kara’s Dad shares, “medicine isn’t really readily available, not a lot of people are willing to make oil and take the risks and such. Fortunately we’re plugged into a good network; though other patients don’t have such luxuries.” Kara’s Dad has a relentless thirst for understanding and discovering more about cannabis to help his daughter. Curious about the effects of specific isolated compounds such as THCa, he goes on, “I want to see what we can do with ‘fractions’ (isolation of cannabinoids) to see what may help (her) more. He hopes to expand his access to varied CBD strains “because a lot of times patients just respond to different strains better.” For instance, “Kara’s been on ProfessorX and CannatonicX oil.” Determined to help more people than his daughter, Kara’s father donates thousands of raised funds to the Epilepsy Foundation of Michigan every month. Over 12k has been donated in the past 5 months, alone.

Kara’s Mom shares prime examples of how parent’s in their scenario become their own master of research, “I read everything. I broke the internet, reading anything and everything I can find.
There isn’t any specific person to refer to on dosing (your child with cannabis oil). You’re kind of flying blind. You can ask what other people have done but everyone’s chemistry is different.” Not to mention also taking different regiments of medication. Dosing with cannabis is more complicated than finding the precise quantity, timing also plays a huge role. Kara’s mom discovered in her research that prescription medication “ONFI and CBD use the same receptor in the liver and should ideally be taken two hours apart. CBD takes precedence over ONFI. Therefore, ONFi stays in the system longer, so it takes longer for that dose to be processed by the liver.”

As many parents would, Kara’s Mom wonders if she will go to college and be able to be self efficient. Cannabis improves her quality of life, but she’s still taking pharmaceuticals that seem to be slowing her down. Optimistic for her future, both Krista and David keep their eyes and ears out for success with cannabis oil-related treatments including those applied to the feet or with a nasal spray; Krista mentioned they would be excited to try if they can gain access to it. They are also looking into trying 50 percent activated / 50 percent inactive THCa and CBD. “We know we’re getting there with her medication, we just have to figure out the best strains and consistencies.”

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