Updated: Oct 2, 2019
Nothing really prepares parents for the first crisis that involves their child. Since day one, Colten had given us a run for our money. Two extra digits on his right foot (What?! Yes. It was the craziest little foot but it was still adorable), a week-long stay in ICU 4 days after birth while he lounged under lights and we prayed for him to eat. Nothing with him went according to plan. Looking back now, I'm glad it didn't. Because it was our plan he wouldn't adhere to. Clearly God had another.
In January 2009 at the age of 3, Colten had his first tonic-clonic seizure while on the stairs with his brother, Gunner (6) and our Great Dane pup, Angus.
<--- That's them!! (a few weeks before the first seizure.) Adorable, weren't they?
Hearing the fall followed by Gunner's yell, running in and seeing Colten... No. Words. Can. Describe. We aren't the first parents to see something like this and sadly won't we be the last. But needless to say, this scared everyone. Bill went into rescue mode doing all the things one shouldn't do with someone mid-seizure. I called 911 and freaked out on the operator. Understandably, Gunner ran and hid. (Poor guy.) We weren't prepared for that day. Thankfully, the EMTs were. Awesome is a word I often use to describe them and it really doesn't do them justice.
At the hospital, we answer all the Dr.'s questions, except one. Did the seizure cause the fall or did the fall cause the seizure? Until that moment, we hadn't given it any thought. In our minds, the fall caused the seizure. What do you mean? Are you saying this could happen again?
It did. Several times. And it seemed that each additional seizure bred 3 more. Soon he was up to hundreds of seizures a day, from Myoclonic, Absence, Clonic, Tonic, Atonic to Generalized Tonic-Clonic. Frightened. That's what we were. We had no idea what was causing the seizures. Tests were inconclusive. We watched as every day activities, things we took for granted, became an issue or cause for concern. Head falling into his cereal bowl. Dropping mid-stride. Losing muscle control and grip on whatever he was holding. Things like these happened often but were minimal compared to the long Tonic-Clonic episodes. With every new seizure, every Dr. appointment, we learned about our "new" son, learned about epilepsy. And sadly we learned treating epilepsy can be a dangerous game.
Rarely do Dr.'s find the right prescription immediately - the one that stops the seizures from the start. It's usually a guessing game; starting at the top of a list and working their way down. Sadly, every prescription on that list has harmful side effects and the side effects get worse the further down you go.
While searching for his diagnosis, they finally settled on Idiopathic Generalized Epilepsy. I'm 99% sure it was reached by your standard pasta check. (You know, throwing ideas against the wall and seeing what sticks) Anyway, they started Colten on Keppra.
"Keppra - It's the best seizure medicine for kids!" says Dr. #1 known for his propensity to be negative and wrong.
In full disclosure, it has been 7 years and I am, of course, not certain that the above was his exact quote. However, I remember clearly being sold on the fact that it was a miracle worker for kids with epilepsy. Maybe it was/ is... Just not for our kid. It did nothing to stop the onslaught of seizure activity. It did, however, completely change his personality and start his cognitive delays.
We used to try to find humor in the situation and call him the Incredible Hulk. We joked about having a t-shirt made for him that stated, "It's because I'm medicated." (Seriously. I wanted that shirt in every color and bet there are other parents that do too!) But honestly, the rage that came with his daily dose of Keppra was awful. Since it did nothing to control the seizure activity, they added Depakote to the mix. As every parent does when new meds are added, we watched for new side effects. We saw weight gain, hair loss, drowsiness and more cognitive delay. We soon found out it was what we COULDN'T see that was the bigger problem.
Blood tests showed dangerously low platelet levels and we were told he was within hours of organ failure. Dr.'s immediately stopped all meds and prescribed Lorazepam. We were at our wits end. How can a medication that is supposed to help our child be this harmful? Is this list of medication all that is available to us?
As Dr.'s worked to find the right medication, we worked to find alternative treatments - essential oils, ketogenic diet, nothing was off the table. Our Dr. (at the time) didn't seem hopeful. He told us that he didn't believe Colten would improve. He said he'd regress and depend on us for the most basic of needs. "Prepare a room for him long term. He'll never leave your house and you will bury him someday." Needless to say, we immediately changed Dr.'s. We weren't starting this path with a defeatist attitude and we definitely didn't need it from our Dr.
Flash forward, new doctor, hours of visits, EEGs, MRIs, nights in the hospital, they finally found a medication that his body would tolerate while at the same time contain seizure activity. Praise God! Not to say it didn't come with its fair share of side effects, like the inability to regulate body temperature, tingling extremities, trouble concentrating, attitude (nothing like Keppra rage though!) But in the grand scheme of things, it was a blessing. A relief. While the dark circles under his eyes, lack of smiles and laughter (seriously, coaches and teachers called him "smiley" because he NEVER smiled due to the meds), were not what we had dreamed of for our son, the fact that he was not seizing at that time was a dream come true. Prayers answered.
This time of seizure reprieve allowed us to focus. We researched as much as we could on epilepsy. Joined forums. Engaged with other parents in similar situations. This is where we learned about the benefits of cannabis for epilepsy. I remember late night conversations with Bill. If available, would we give Colten cannabis? We struggled with the stigma. (Please keep in mind. We were very "green" (pun intended - haha) on the topic. During subsequent research, we would learn and soon educate others on the differences of the plant varieties. High CBD strains, i.e. hemp, is where it's at... Hemp Helps.
That was our message. Every time the topic came up, every time we met with Legislators and advocated for the legalization of hemp, we focused on the benefits seen/proven through CBD treatment. HEMP treatment. Testimonials from parents across the country shouting the positive effects of CBD treatment, not only for epilepsy but for a variety of other conditions, can be easily found. It wasn't easy for us to continue to give Colten medication that dimmed his personality, that made it difficult for him to participate in activities with his friends. All the while knowing full well there was something else out there. Something that other parents had the opportunity to give their children that we couldn't. We were so hopeful when reading their success stories but felt so helpless on a daily basis because it wasn't available to us in Kentucky. We wouldn't/didn't give up.
Eventually, (years later) it was like a Perfect Storm. Passionate Parents hoping to improve their son's quality of life + a State historically known for hemp cultivation looking to grow again + Kentucky Legislators fighting for deregulation of a harmless, therapeutic, industry-building plant. Times were changing in Kentucky and for Colten. Thankfully so. Now, we are cultivating and producing high quality CBD oil; not only for Colten (who is now seizure, pharmaceutical & side-effect free), but also for many others that need the relief that CBD oil can provide.