Medical Marijuana Journey, Weeks 6-12: Distracted

This is the third blogpost about our daughter Awesome's trial of Medical Marijuana for Intractable Epilepsy.

If you want to go back and read the first two blogposts, please click on these links:

First this one: Awesome's First Week on medical marijuana,

And second, this one:  Weeks 2-5 of Awesome's Trial of Medical Marijuana.

Weeks 6-12, it seems, were about everything BUT medical marijuana.

At the end of that second blogpost, we were five weeks into a trial of medical marijuana for intractable epilepsy, and we'd just left our local Children's Hospital after a discouraging 48 hr VEEG (video EEG). Not only was there no evidence of a seizure-free miracle during that VEEG; Awesome had had the worst EEG she'd ever had.  She was having seizures (short absence seizures) literally every few minutes.

We left the hospital with instructions from Awesome's epileptologist to:

1) Slowly wean Awesome off her anti-epileptic drug (AED) Vimpat over the next 6 weeks because he thought Vimpat was not only not stopping seizures, but was likely causing seizures. 

2) "Get going" on the CBD trial--which was her doctor's gentle way of telling us to speed things along so we could all know, sooner rather than later, whether CBD was going to work for her.

3) Trial a new AED called Ethosuximide--which he didn't expect to work--as a way of proving--in a negative way--what kind of seizures Awesome's little seizures were.

4) To report back to him in early fall if we hadn't seen a "significant  difference" for the better in her seizures and seizure counts.  If things were still going badly, we'd be given a referral to a different epileptologist who would take Awesome through the pre-surgery work-up process to determine if she might be a good candidate for surgery.

This was a lot to get accomplished in a relatively short time (3-4 months).

Before we could implement these instructions, we first had to organize our minds and have some idea of our priorities.
Our first priority had to be weaning Vimpat.  If it was causing seizures, the sooner it was gone, the better.  At the slow but prudent rate of 25 mg a week, a complete wean would take a full six weeks to accomplish--and likely another two weeks beyond that to get back to a less reactive baseline.  In short, we'd lose about 2 months of the original allotted 6 month CBD trial to weaning Vimpat.   During these 8 weeks we could expect a lot of seizures.  Even slow AED weans unsettle the brain.

Second priority would be trialing Ethosuximide--as Awesome's doctor had requested.  We weren't enthusiastic about this given that both epileptologists who'd reviewed Awesome's VEEG, believed ethosuximide likely wouldn't work.  And we were especially unenthusiastic about doing this AED trial in the middle of our medical cannabis trial.  Ethosuximide was yet another hurdle--another potentially problematic AED--standing between us and giving CBD the time and space it needed to become the miracle we'd hoped it might be.  But, because we respect Awesome's epileptologist, and because we understood why he wanted to trial ethosuximide, and because there was some small chance it might be Awesome's miracle for her little seizures, we were willing to do as requested.  And anyway, if ethosuximide was as likely to fail as had been implied, the sooner we got the trial started, the sooner we could simply be done with ethosuximide and wean it.

Third priority on our list--although we really considered it first priority--was trialing cannabis..We were eager to get the other medications out of the way--to clear the decks, so to speak--so that CBD could have center stage.

 Much was riding on the results of these trials and wean. The clock was ticking.  And so, we wasted no time in getting started.  The day Awesome left Children's Hospital's Epilepsy Monitoring Unit (EMU), we made two changes.  We titrated (increased) Awesome's daily CBD dose by 0.22 ml (33%), and we decreased her daily Vimpat dose by 25 mg. (14%).

Whether it was the Vimpat dose reduction or the CBD dose increase (or a combo of the two)--or even just the removal of the stress,anticipated or actual, of the hospital---or all of the above-- the next day--Awesome's first full day back home, we saw stunningly positive results.  Awesome's daily absence seizure count went down from the too-many-to-count range into the teen and single digit range.  We were both relieved and encouraged!

However, our relief was short lived.   The very next day (the second full day home from the hospital) Aweseome began to experience a side effect backlash from the addition to her drug regimen--four days earlier--of Ethosuximide.  Because Ethosuximide's side effects parallel and piggyback those of Vimpat,  the addition of ethosuximide, had once again pushed her back above the GI side effect threshold.  (She'd only just fallen below the threshold a few weeks earlier with a pre-hospital Vimpat reduction )  Awesome now experienced the return of serious GI issues--abdominal pain, nausea, and diarrhea.

There's no way to win with epilepsy; in terms of misery, it's often a zero sum game in terms.  Epilepsy seems to be on friendly terms with Newton's Third Law of Motion, which states, "For every action, there is an equal and opposite reaction."  In our experience, if seizure counts go down, then AED side effects go up; if AED side effects go down, then seizure counts go up.  If one kind of side effect gets better, another gets worse.  Epilepsy just sucks in this way.  It exacts its pound of flesh and misery from your child, if not in one way, then in another. In short, despite all the changes, Awesome's misery quotient remained unchanged.

That same day, which was a Sunday--the day we always pre-measure & pre-assemble medication doses for the following week--we, Awesome's parents, sat down and worked out a detailed preliminary (because things could change, as we went along) medication schedule for the next three months--titrations (increases) and reductions of the various medications and when they'd occur.  This was a  hopelessly complex schedule.with lots of moving parts. We'd be making 1 to 3 medication schedule changes each and every week for the next several months.

That Awesome's medication schedule had become so actively changing, is very ironic given that Awesome's doctor had told us back in May (before starting this CBD trial) that we should make NO changes whatsoever--whether to AED's or supplements--in her medication during this six month medical marijuana trial.  The only changes should involve medical marijuana itself.  He's always been clear--and rightly so-- that when it comes to any drugs or supplements, you make only one change at a time, waiting at least three weeks between changing different medications so that you can tell what medication or change is causing what.  With one change at a time there's rarely any confusion as to what is causing what.  But now here we were with a doctor-mandated medication schedule involving numerous simultaneous changes over several months.  With three different medication shifts superimposed onto each other during the same time frame, we worried,  how will we ever be able to figure out which medication change is causing which change?  But back to the story....

If anything was reliably true of this time period, it was that drug-wise, nothing was static--another medication dose change was always waiting just around the corner.   And sometimes, for mercy's sake, based on our observations of what Awesome needed, we'd slow or hurry these changes.  This time, because Awesome was so miserable with GI side effects, we hurried the change.  We waited only five days (instead of the usual seven) before we once again reduced Awesome's Vimpat dose by another 25 mg (from 175 mg to 150 mg).

This change--like the others--brought nearly immediate results.  And happily, these results were positive.  (Are you starting to notice the alternating positive and negative results with these changes?)  The day after reducing Awesome's Vimpat, her AED-related GI issues were again manageable, and relatively easily ignored.  Her abdominal pain and nausea were again gone; her diarrhea became intermittent.  Once again she'd slipped below the mysterious serious GI side effect threshold.

But, in this our relentless schedule of medication changes, this relief too was to be temporary.  The very next day, according to Awesome's epileptologist's instructions, we titrated (raised the dose of) Ethosuximide from 250 mg to 500 mg..  We did this by adding an extra daily dose of Ethosuximide early in the morning (3 hrs before waking) when we gave her her early morning Vimpat dose.

Again, this change brought swift and substantial results. And they too paralleled and piggybacked on earlier Vimpat side effects.    Once again Awesome was pushed up and over another hidden but very real threshold--this one, for fatigue and exhaustion.    This side effect threshold was one we especially didn't want to find ourselves again above.  When she'd experienced fatigue and exhaustion earlier with Vimpat, Awesome had to taken to bed for 3 hours every afternoon, restlessly moaning about how tired and cold she was, all while wearing her winter coat and wrapping up in blankets in the middle of summer.

It's hard to watch your child feel this bad.  But here we were again.  The morning of her first elevated Ethosuximide dose, Awesome slept long and late.  She awoke only with difficulty, and then began begging to be allowed to go back to sleep; she was very tired, grumpy, groggy, exhausted, and minimally functional for the rest of the day.

How, we wondered, was this progress for our child's quality of life?  It seemed that we'd just jumped out of the Vimpat GI symptoms side effect pan and hopped a few days later, right back into into the Ethosuximide drowsy and exhausted side effects fire.

Dealing with conventional AED side effects is an unavoidable part of living with epilepsy.  But such rapid changes were unusual..   Awesome's life--and by extension ours, as we cared for her--was like a boxing match in which Awesome was constantly being knocked down and dragged out--either by a big seizure, innumerable little seizures, or various AED side effects.  Every time Awesome bravely managed to fight her way back to standing again, she was dealt another blow and fell again.  We stood helplessly by on the side-lines watching her get pummeled until wed finally reached our limits in watching her be subjected to this.  Something had to change--or rather, remain the same.  Awesome was being hammered at too fast a pace by these drugs.  She had to have time to catch her breath.  To exist for awhile as a child instead of getting battered to the floor again and again.

After much thought and deliberation, we decided we just couldn't--in good conscience--implement all these changes simultaneously.   It was simply too much. We proposed segregating the changes--at least as much as possible.  We'd continue to reduce Vimpat (once a week) as planned, but we'd slow down and carefully consider whether we really needed each subsequent CBD titration--as Realm of Caring's patient counselors were urging us to do--instead of automatically titrating CBD every 3-4 weeks.  And finally, we'd reduce ethosuximide down to a low 250 mg maintenance dose and delay the  trial of ethosuximide at a higher dose until after the Vimpat wean was complete.

Our new plan involved changing only one medication at a time once a week..  This would both be easier on Awesome and also make it easier for us to see the results of each change--which would now take place against an otherwise stable background.

The nurse practitioner we contacted at the hospital EMU thought our plan a reasonable one; Awesome's epileptologist later agreed.  As an unexpected bonus, the epileptologist changed the maximum ethosuximide trial dose to from 750 mg. down to 500 mg.  So we got around to trialing ethosuximide at a higher dose, it would now involve only one additional titration, not two  Likewise, when we weaned off ethosuximide, it would also take less time.

So for the rest of Weeks 6-11, weaning Vimpat became our sole focus.

During the middle weeks of the wean, Awesome's daily little seizures counts remained fairly steady--in the single digits and teens each day--with no significant increases or decreases.  What was truly amazing in these middle weeks were the changes we saw in Awesome's energy levels. As Vimpat was reduced week by week, it was as if a fog or a heavy weight was being lifted from her shoulders.  She was no longer needed 10 1/2 to 11 1/2 hours of sleep a night; she no longer awake late and with difficulty. begging to go back to sleep again.  Awesome now woke between 6:30 and 9:30 each morning, rested and ready for the day.   She no longer retreated to a quiet room by herself--headphones on, absorbed in her computer because that's hall she had the energy to manage--to rest and recover after every small exertion. She went outside and ran around in the backyard.  She had energy!

It's hard to know just how bad you feel until you feel better.  It was hard to know just how badly Vimpat was zapping Awesome's energy until Vimpat was no longer zapping her energy.

However, it wouldn't stay all sunshine and flowers for long. Remember, "For each action there is an equal and opposite reaction....?"   And so epilepsy's misery quotient zero-sum game rule began to balance the score. At 75 mg, the Vimpat wean began bite back--to exact its revenge, to take its pound of flesh.

This biting back was in the form of seizures.  (And unfortunately, as the seizures increased, Awesome's energy levels again decreased.  It had been a beautiful moment while it lasted....)

First, Awesome had an aura (a simple partial seizure that comes before a bigger seizure as a kind of warning sign of the seizure to follow).  We caught it early and ended it with a rescue dose of CBD so that the aura didn't progress into a full blown status seizure. We were pretty pleased that CBD could rescue Awesome.  Her auras typically don't resolve on their own.  Score one for medical cannabis!

Secondly, a few days later we began seeing clusters of little seizures as Awesome was falling asleep at night.  She'd have up to a dozen of these as she transitioned from waking to sleeping.  She'd had always had issues transitioning from sleeping to waking--it's traditionally been her most seizure prone time of day.  But it was new to see them at the end of the day as she was transitioning from waking to sleeping.  It was also pretty discouraging.

A few days after the bedtime seizure clusters started, Awesome had a big status epilepticus focal seizure that generalized to a tonic-clonic (convulsive) seizure.  She lost consciousness so quickly that we couldn't give her a rescue dose of CBD oil (we were afraid she's aspirate it).  Being optimistic and hoping that--like the big seizures she'd had in June--this seizure might actually also end on its own (instead of becoming a status seizure that wouldn't stop without a rescue drug), we waited a full 5 minutes after the seizure started before giving a rescue dose of Diastat.  And then instead of working quickly as it had likewise done since she'd started CBD, Diastat--just like it did before CBD-- took a full 10 minutes to work.  As a result, the seizure was a full 15 minutes long.  We were especially discouraged by the particulars of this seizure.  We had hoped, based on Awesome's big seizures in June, that we'd seen the end of Awesome's status seizures--that CBD was going to protect Awesome from them.  We tried to tell ourselves that withdrawal seizures are different--stronger and longer--and that this was just a withdrawal seizure--that Awesome simply hadn't been on CBD oil long enough to have built up enough CBD in her fat tissues to face down really strong seizures like these withdrawal seizures were.  And so we told ourselves that we shouldn't give up hope for CBD working.

We'd just convinced ourselves of this when, six days later, a couple of days after the Diastat had worn off and two days after we reduced the Vimpat dose to 50 mg, Awesome had another big status seizure.  This time the seizure generalized quickly and we wasted no time in getting the Diastat in her.  As a result, the Diastat worked quicker--and maybe the CBD helped it work quicker?? (we could choose to believe this!).  The seizure was only 8 minutes long,

 Finally 8 days past her last dose of Vimpat Awesome's brain suddenly calmed.  Vimpat's last gasp, it's parting gift of a storm of seizures had passed.  The sun came out and all was new again.  Her daily little seizure counts returned to the low single digits and teens.  We all breathed a sigh of relief.

I emptied the pill boxes of emergency doses of Vimpat, gathered up the prescription bottles still containing Vimpat, and put them all into a gallon bag along with the rest of her failed antiepileptic drugs.

Now only the ethosuximide trial stood between us and a CBD alone trial.  But I'll write about that in the next blogpost which will cover weeks 13-15 of our medical marijuana journey....