So, what’s happening with the Marijuana oil?

I’ve been meaning to write an update on marijuana for Lydia’s seizures.

There’s no news and no change, let me say that first. Lydia currently has about 50 seizures a day. She hasn’t been on marijuana oil since March. The last and only time it worked for her was in December. At that time, she had an 80% reduction in seizures for about two weeks, then the seizures came back with a vengeance. We tried to regain control for the next three months but couldn’t, so we stopped giving her the oil.

Since then, we’ve added in Valproic acid in addition to the Lamictal and she has been holding steady at about 50 daily seizures. The pharmaceuticals might NOT be helping as her seizures actually stabilized before we added in the Valproic acid (and she’s been on Lamictal for ages). So far she’s tried nine different pharmaceuticals, an extreme diet, and had a surgical implant, yet marijuana oil is still the only thing that has ever definitely helped, even if it was short-lived. I’d like to try again, but honestly I’m feeling pretty overwhelmed by it all.

She is making very slow but definite progress in her limited skills. Her neurologist suggested adding a third drug to her regimen in the fall. I’m reluctant to add to her prescriptions and increase her risk of brutal side effects, plus I hate replacing my doe-eyed party girl with one zonked-out sleepyhead. Her little sparkle is what keeps me going.

Did she really have a near-seizure-free Christmas thanks to marijuana?

Definitely. We gave her one small dose and we could tell it was working within 20 minutes. Her perpetually cold hands and feet warmed up. She slept peacefully all day, which was unusual for her at the time. She used to wake up frequently and have clusters of seizures. But this time when she woke up, it was an unprecedented moment – no seizure cluster! She continued to have fewer and fewer seizures over the next few days. One drop every few hours of heavily diluted marijuana oil was all she needed. She got down to 3 seizures one day from her usual 80. She looked Mark in the eyes for the first time. She was more alert. It was amazing. But then gradually her seizure counts started to climb. By day 14, she was having more seizures than ever. Suddenly she was having over 100. It gave us a terrifying moment of doubt. So we stopped giving her oil after a couple days of high seizure counts. Then we let her ‘cannabinoid system reboot’ for a week, and tried the same oil again. No luck. And nothing has worked since.

Why do you think it stopped working?

There are a few theories as to why it stopped working:

  1. She developed a tolerance. In order to test if it was a tolerance issue, when we began to lose control of her seizures at day 14, we doubled down and gave her 250% stronger doses for a couple days. No luck. We then let her system ‘clear out’ for a week and then tried the same oil. Again, no luck.
  2. It was a new or different batch of oil. It was definitely not a different batch of oil. We used the same jar of oil, the same syringe to administer, stored the jar in the same place, at the same temperature, everything.
  3. It worked because there was just enough of the previous strain in her system to interact in the right way. But then it wore out and stopped working. We tested this possibility by recreating the steps we’d taken right before the oil started working. We duplicated everything that we’d done the few days prior to giving her the oil. No luck. She was even on a very regulated diet at the time so I even knew exactly what she had eaten.
  4. The seizures found a new pathway. This is the only theory that works so far even if it’s pretty rough. Imagine that her brain is like a teacup with cracks. We filled the longest cracks and held the seizures at bay for a little while. But then the level rose higher and higher until it found other cracks and the seizures came pouring out again. It’s the way her brain wants to operate. This theory also sort of explains why her seizures have been slightly different ever since that brief reprieve when we had success with the marijuana oil. Ever since then, she doesn’t have clusters and she sleeps better. Were new pathways formed? Different cracks accessed? It is all so mysterious.

What was different about that batch of oil?

This is the frustrating thing – it wasn’t particularly high in CDB or CBN or THC or anything that we could tell. It was a pretty run-of-the-mill batch according to what we could find out. Your regular ‘ol marijuana. We have no clue why this particular one worked when so many others didn’t. It is all so frustrating and discouraging.

Where did you get it?

We live in Oregon and have her medical marijuana card.  We paid to work with Mx:Biotech out of Eugene. They provided a method of micro-dosing and ‘cohorts’ of oils that included 3-5 strains in each batch. It was very helpful to have their guidance and to have oils made for us where we could circulate through many strains in order to find the right one(s). We would not have found something that worked on our own. That was an amazing thing they did for us, even if it didn’t last.

They also provided reliably consistent oils as opposed to dispensaries, where one ‘Harlequin’ or ‘ACDC’ strain is not the same as another. I liked that they collected a lot of data on our trials so we could help contribute to research. There clearly needs to be more research.

But the downside is that we are unable to know the names of the strains that worked, since that is their proprietary information. All we know is it was called ‘Cohort H’ and that they will give us more if we need. The other downside is that they use butane extraction. And that they have sort of ONE working theory/approach to marijuana as medicine and I’m not sure it is the ONE that Lydia needs, i.e., they don’t believe in THCa or high CBD strains.

Have you tried THCa or CBD oil?

Yes, both. But I’m not sure we gave either a fair try. One CBD oil had too much THC in it (~50/50) and definitely was too much for her system. It increased her seizures and we only tried it for a day or two. The other CBD oil was in agave syrup from a dispensary and was hard to dose or trust. We also tried some random, reportedly high CBD concentrates. But nothing worked. So I’d like to try again with CBD if we can find someone to guide us through. You can buy Charlotte’s Web online now! But I hear mixed things about their product. And now there are alternatives such as Haleigh’s Hope and Palmetto Harmony.

I made a THCa oil from Cannatonic and it didn’t help. Though I didn’t try it with an active/decarboxylated oil but just on it’s own. I’m not sure it was the right thing for her and it felt like such a shot in the dark. I have no idea what strains to use for any of this stuff or how much to give her, etc. For awhile I was seeking help from David Mapes but lost the thread. This might be another approach to revisit.

To complicate it all further, some folks say it needs to be a combo of all of the above. No wonder I am overwhelmed!

Questions? Advice? We need some help on this one.