New Zealand: Guest Blog Post 23/6: Katy Thomas – Last night we ran out of medicinal cannabis for my 7yo

Katy Thomas  TV Presenter, business owner and patient advocate just posted this

NZ medical cannabis has turned into a complete dogs dinner

She writes at.

It’s time to try THC on our 7 year old.  The next drug the psychiatrist and neurologist want to try is another anti-psychotic med.  We owe Customs another $400 for the medicinal cannabis they seized last week.  Eddy can’t go to school again can he?  I’m sick and I can’t sleep.  I’ve lost my voice to laryngitis after repeated overnight stays in Starship, my mouth is littered with ulcers. These are all conversations no parent wants to have and we have uttered more than once in the last week.

Last night we ran out of the medicinal cannabis my 7yo is prescribed for his nocturnal epilepsy. Despite spending the better part of last week trying to slowly wean him onto a local substitute, the jump was rough.  Little Eddy does not tolerate isolate CBD.  I’ve tried so many in vain.  They proliferate under racially problematic “purity” arguments but observational studies match our own experience – full spectrum CBD offers refractory epilepsy patients more seizure control at a lower dose with less adverse effects.

That is not to say isolated CBD does not control his seizures but that gain is offset by more self-harm, agitation, violence to others, rocking back and forth.  Very little continuous sleep beyond a minute or two at a time.  He displays the same disturbed behaviours during the day too and is so exhausted from interrupted sleep the night before, he spontaneously crashes out.  He requires constant supervision day and night.  Earlier this year I was promised a pittance of 6 hours a week individualised funding that wouldn’t touch the sides of a night off.  I wouldn’t know.  Those hours have never materialised.

CBD Isolate is synthetically manufactured or harvested from any number of cannabis cultivars to extract only the CBD molecule.  When full spectrum CBD is harvested from whole cannabis plants, it captures hundreds of phytocannabinoids, flavonoids and terpenes that synergistically act on our own endocannabinoid systems added benefit.  The combined therapeutic effects of all cannabinoids taken together is known as the “entourage effect”. 

For those like Eddy, with ADHD comorbidities, recent self-reports reveal higher doses of phytocannabinoids and terpenes lead to reduced ADHD medications and ASRS scores.

Knowing this, our doctor tried to recreate the balance of cannabinoids of Eddy’s usual full-spectrum CBD product by swapping CBN (cannabinoil) for THC plus some terpene drops.  Eddy’s full spectrum CBD is rich in relaxing, anti-inflammatory and anti-oxidant terpenes like myrcene, beta-caryophellene, linalool and terpinolene as well as Cannabinol. Unlike other cannabinoids, CBN is rarely a decarboxylated acid (CBNa), but rather an oxidised form of THC that degrades when heated.  It has anti-convulsant and sedative properties and only mild psychoactive effects compared to THC.

But all we could access in a pinch was THC:CBD Tilray 1:1 and another isolate form of CBD.  Tried and failed.  He was so agitated, even with an additional overnight carer in the house to supplement Mum and Dad’s long-taxed empty well of night-parenting, no-one slept.  Not even little baby Harry downstairs.  Not viable as a long-term solution.  Barely usable as an emergency substitute.  That is all we are left to work with only 2 approved 2 CBD products in NZ.

Today my letter to the NZ Herald Editor was joined by 4 more, supported by epidemiologist Michael Baker calling for an end to the war on drugs.  More voices elevating our cause.  More speaking for the drastic need for a full revision a Nixonian 1975 Misuse of Drugs Act that is completely out of step with a government grounding itself in science and evidence.

“I’m so tired Mama”

“Me too baby, come rest your head on me.”

“Thank-you Mama.  I know you are going to save me.  No more seizures.”

“That’s right baby.  No more seizures”

I was tired before our access was prohibited.  I just want to go to bed like all the other mother’s tonight but I can’t. On the precipice of sleep my eyes fly open – what if the rash is the start of the Lamotrigine rash?  What if I don’t hear the next seizure?  How do I turn my heart down, The blood-rush of night-panics deafen me in the dark.  My baby knows I can save him.  So once more to the fore.  It’s 3am already, but I still have more letters to write.

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