Saving Josiah: Increasing THC Stopped Seizures When CBD Failed

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The adoptive mother battling young son's T.S.C. stop her son's Seizures and controls his behaviors by changing his protocol:

Every day there’s a new testimony about how cannabinoid medicine has changed a person’s life. The story of Josiah, who’s not even 5 years old yet, has to be one of the most intense. His mom reached out in November, so many people do it’s extremely difficult to remember. I gave her advice to get a cannabis card for him and away she went buying products from online and through dispensaries – only to find that her ‘cannabis specialist’ doctor gave advice about CBD and her little boy’s seizure medications that caused a nightmare of interactions to occur. What followed was one of the worst cases of nocturnal seizures plaguing a child I’ve ever seen – nightly I’d watch him on his closed-circuit monitor as his mom shared videos, praying with her. One with vast experience can see where in the brain the seizures are starting, type, frequency, onset, and from that determine a cause and change the protocol as needed – he needed a drastic change immediately as his life was literally in jeopardy. It was obviously withdrawal seizures coming from a child experiencing a CBD: Drug interaction due to a pharmaceutical that increases in blood serum with the use of CBD. We’re in an era in which doctors, as much as their patients, do not realize the amount of liability that comes with errors of omission – but this mom now does. Her entire story is incredible and well worth a few minutes to read.

As much as CBD can help people with seizures, there are many of us that it can hurt by interacting with our medications. This is why my daughter, a former compassion patient so many know – Genevieve – no longer takes any pharmaceuticals. The drug that Josiah was taking, Lamictal, was also a drug that was discontinued from her protocol based on its lack of efficacy, its cannabinoid: drug interactions, and its strange fluctuation with blood serum levels.

“My dream has always been to be a Mama. After a failed and childless marriage, I decided to pursue motherhood on my own. I learned of snowflake babies, embryos that were available for adoption. In essence, I would be able to give birth to my adopted child” she told me when I asked her about how Josiah entered the world. He’s lived with such health complications it was imperative to find out the history – his mom wanted a child so badly and adopted him, has loved him, has fought for his survival, and now has turned to the powers of the cannabis plant to ensure his well being after pharmaceuticals have failed to stop seizures and more. I asked her to tell us about Josiah’s life and how she came to find me in her own words, they’re so brutally honest, humbling, and inspiring at the same time. Let’s hear from this Florida mom that’s willing to go to the end of the earth for her son.

“I chose an open adoption, and have stayed in contact with the donor family. They had no inkling of the genetic disorder that possibly is mingled in with at least one member’s DNA. It took the birth of Josiah to bring that to everyone’s attention. My pregnancy was carefully monitored and completely normal. They mentioned at one point that his heart had a bright spot, but up to 50% of babies do, and they expected it would disappear after birth. The specialist did not identify that bright spot as a rhabdomyoma, a benign type of tumor, he had three.”

“When he was two weeks old a white birthmark showed up on his tummy. I felt physically sick when I saw it, though I could not tell you why. I know now it was mother’s intuition. I just knew something wasn’t right. I looked up white birthmarks, learned about ash leaf spots, and TSC. I brought up the concern with the family doctor and she dismissed it as nothing. Over the months, 8 more spots developed. She assured me that Josiah was crushing milestones, was thriving and alert and there was no possible way that he had Tuberous Sclerosis Complex – whatever that was. This led me down the road of research that has yet to end to this day, a road to save my son.”

“At my insistence, she sent me to a pediatric dermatologist who used a Wood’s Lamp on his spots. She admitted it could be a sign of TSC, but was highly unlikely as she observed my very coordinated and mentally advanced toddler. I asked for a referral to a geneticist and was reluctantly given one. I waited six months for the appointment with that geneticist. He actually laughed at me and my concern. “Take your healthy toddler with white birthmarks home and enjoy him,” were his exact words. One year later I gave birth to Josiah’s brother, who also had the white marks. Something was off, I knew this like a whirlwind of wild, erratic, and destructive behavior began coming from my beautiful baby boy – my 3 year old intelligent and completely verbal boy started slipping away.”

“Life seemed as if we had been sentenced to some type of hell. He pulled curtains down, tore up favorite books, even ate glass. My sweet little Josiah had disappeared, and I had no idea what was going on. I was later to learn this was TAND – Tuberous Sclerosis Neuro-Psychiatric Disorder. I have an extensive background as a special ed teacher, and I still could not solve the behavior problems of my own child. I was exhausted, defeated, and desperation flooded from every cell of my body.”

“If that wasn’t enough chaos to bear after making such a life-altering choice in adoption and then the medical situation, we suddenly lost my mother to cancer. At that time, we attributed Josiah’s changes in personality and behavior to grief and the addition of a sibling. But nothing got better, life got worse. Each day was like living a different kind of nightmare as I tried to tame and ‘find’ my son while caring for a new baby and grieving the loss of my mother.”

“In November of 2018, I remember screaming to myself thinking about him and wondering “my poor son, what’s wrong with your brain?” At that moment, I heard myself. There was something wrong with his brain, and all the doctors had missed it. Almost simultaneously he started having what later would be identified as complex partial seizures. I had never seen anything like it. I caught one on video, and the Sunday after Thanksgiving 2018, I took my son to the emergency room.”

“They did a CT which showed multiple lesions on his brain. He was admitted to the hospital for further study. The next day a team of neurologists came to his hospital room to talk to me. I thanked them for coming and asked them to add a geneticist to the team, as what we were dealing with was Tuberous Sclerosis Complex. They laughed at me, too. “Sweet sweet Google Mom,” was the pervading vibe I received. Nonetheless, they did as I requested, and also ordered an MRI. It was one of those same neurologists that came back to me with an ashen face after the MRI.”You were right. Your son has TSC. I’m so, so sorry. I’m just terribly sorry.”

“He was immediately started on Trileptal. A few weeks later I told them that the seizures were increasing, not decreasing. Instead of weaning him off, they added Vimpat. Then Epidiolex. Then Onfi. We had seen periodic seizure relief, but were still dealing with no fewer than four seizures a week, and at times up to 70 a week. In October of 2019 he was admitted to Nicklaus Children’s Hospital, in Miami, FL ; taken off all meds; and admitted for a 5 day VEEG (Video EEG). He did not have one seizure that week. It was all so bizarre.”

An Infant with T.S.C.’s brain, imaged at ages 10 weeks, 4 months, and 8 months.

“We left the hospital off of everything. I asked for a medication holiday before we started up a new regimen, which was to include Sirolimus. The seizures started again on the way home in the car. We tried Sirolimus for several weeks, seizures became worse, he was extremely constipated, had nearly constant insomnia, and then the hallucinations started— and I called it quits on that and asked to try Lamictal while I pursued getting him set up for his Florida Medical Marijuana Card.”

I made the decision to get his card after having my first contact with Mike Robinson on November 7. He convinced me that we were not going to see real results without using the whole plant. We received his card in mid-November 2019. I had questioned his various high-paid specialists and his cannabis doctor to see if there were contraindications as I didn’t want an issue. The response I received from all three was a resounding No – the two were compatible. So, we began CBD oil and some low dosage THC blends. And while his daytime seizures nearly disappeared, night times were a nightmare. The seizures became more violent and more frequent. I was so confused. I did not want to give up, but I had to find someone who knew more about this than I did. I spent hours researching and reading. I knew that if I could not find a way to stop the seizures, then brain surgery was next.”

“On January 22 I contacted his Jacksonville Neurologist and asked for instructions for a Lamictal wean. He did not support that idea. I told him I had to give cannabinoid therapy a full chance and to do that I wanted him off all AED’s. Reluctantly, he gave me the weaning schedule: 50 days to come off of the 50mg Josiah was taking daily.
I was desperate. Not one ‘specialist’ could advise me on dosing or product for Josiah. I was so alone, so lost, and fighting like crazy to find an answer. I reached out to Mike again on January 23, 2020. He immediately identified his violent night seizures as overdoses of Lamictal. He told me that CBD raises blood serum levels. This child had been ODing on Lamical since November- and it caused damage I could see but I trusted these specialists. Mike told me immediately to eliminate almost all CBD and use the 4:1 THC: CBD blend we had until I had his oil made. We saw a reduction in night seizures right away. We went from 6 a night to 2 a night.”

“Mike instructed me on how to make oil for Josiah that would stop the seizures altogether. The next day I went to gather ingredients and equipment to make Josiah’s own MCT oil. January 25 was “Making Day.” We made Josiah’s first batch of oil. There have been delicate monitoring of withdrawal seizures. Mike has carefully suggested how to make this go as smoothly as possible for Josiah by adding a little CBD here and there to not make the wean so dramatic as to cause violent seizures.
On February 5th we had our first full day with no seizures!!! We had a few withdrawal seizures over the next few days. But our next full day seizure-free was on February 10. And now, we are celebrating 5 days seizure-free!”

Proud mommy Heather after being coached through making her very first batch of infused cannabis oil for Josiah – you can see the sense of empowerment in her eyes.

“Our little family is healing. All of us are. Thank you, Mike. I have grace for today and bright hope for tomorrow. So many prayers have been prayed for Josiah’s healing and my guidance. And I do not have one doubt in my mind that those prayers brought us you. “

I have no doubt in my mind that what you put out into this universe will come back to you. Heather put out the need for help, the need for compassion and love – and it came back to her in a way that wasn’t making anyone a hero – it was making a plant known. It was changing the world one person at a time and now Heather will step into the position I was in when she needed help. When we all realize we are here to help each other, not to compete or beat each other, our world will become a peaceful place.

Helping Josiah obtain freedom from seizures was a gift – many watch the clock tick and consider their time being oh so valuable. “Time is money” I head day in and day out. With Josiah – time meant his life. Time meant his future, and now I have the time to kick back and read this story knowing that when Heather calls me in the morning about the next batch of oil she’s making it won’t be in a panic at all. It will be with confidence and the ability to help the next person that needs it. We are all one – don’t ever forget that.