GUEST BLOG: Katy Thomas – Last night we ran out of medicinal cannabis for my 7yo

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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.

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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.

Katy Thomas is a TV Presenter, business owner and patient advocate.  She has a petition at her blog site wellfitmum.com and you can learn more about her journey at Instagram.com/iamkatythomas   After Eddy was refused ketogenic diet support for his epilepsy through ADHB, she started ketogenic food company Keto Happy Co. to improve patient access and support.  When she isn’t working on that she is Mum to Eddy and Harry.

9 COMMENTS

  1. Cannabis and psilocybin mushrooms both grow well in AO/NZ.
    Head down, mouth shut @ KT like we’ve all been doing since the first flat white foot clumped down on the pristine beaches here.
    Politically, we’re governed by the lowest, dumbest minority who’s only understanding is that greed is good.
    If you’re expecting to conjure up a ground swell of public support for you and your child then you don’t know the kiwi-as public that well. They’ll get pissed and after staggering home to beat the mrs’s they’ll snoop over your fence and see your pot and they’ll be the first to call the cops on you.
    This is AO/NZ @ KT. Socially, an arse scratching back water. We’re dominated by dumb, piss swigging bullies and that’s just our politicians.
    There will be more than me looking on at your plight with a morbid sense of powerlessness.
    ( Andrew Little..? Do your fucking job !? You’re a lawyer, that gives you a God like status according to the law? )

  2. I am sure Mr Little has this under control. He is doing such a good job with mental health he will soon have time to sort out the joke that is medical cannabis.
    Most of those I discuss medical cannabis with are in the same camp as me . When we were asked to vote for the legalization of marajuana we were assured medical cannabis was already sorted as being legal and available

    • As we now know is total bullshit as the thc level has been set so damn low it is almost impossible to meet that level. Plus the bullshit bureaucratic costs you have to go through to sell the end products .

    • Also the fact the THC level for thc products is set so low is all on the NO VOTERS heads as well.
      Family First and all their bullshit followers have a lot to answer for .
      The facts of the matter are they don’t give a jack shit so long as they are “OK JACK” when they aren’t THEY SCREAM LIKE WOUNDED BULLS. Hence why Pharmac is a total waste of space with it’s blatant under funding.
      THE I AM OKAY JACK RULES IT”S FUNDING and that is CONTROLLED BY THE GENERAL PUBLIC’S I don’t GIVE A SHIT MATE. Well that attitude is coming back to bite them all in the butt. The fact the Pharmac review and double it’s budget and triple it within 3 years only drew 102,000 plus signatures and took 2 years to achieve says plenty. The fact the funding model of Pharmac was left out of the review is on the general public too. Why ? The old I am paying to much tax middle class crowd and their refusal to pay a single cent more on their accumulated assets value says so. Labour are to damn scared to do shit. It is all blatant window dressing. The General public have been bullshitted to believe that Pharmac and our healthcare system is world leading. In fact it is even a disgrace to call it third world . Labour and national love to quote the big figures but those figures are spread over multiple years so the actual amount that gets spent year on year is pathetic. Like the Pharmac 200 mill in this years budget was only 20 mill more than the budget before that will actually hit Pharmac bank account this year.

    • “I am sure Mr Little has this under control.”
      Hmmf. What good is that going to do Eddy tonight, or tomorrow night?
      In my eyes I hold Andrew Little guilty of child abuse.

  3. Dear Katy, I have been reading your heartbreaking accounts of the struggle with intractable bureaucracy.
    Logically, as members of 5 eyes there should be no customs/import duty on your son’s medications.
    Logically, as a professed member of the human race, our Minister of Health should step up.
    This is not good enough when we have had past ministers manufacturing and selling lethal synthetics.
    This is not good enough when there is a liquor store on every corner of every town. I can buy gin, vodka, tequila, liquor from all over the world and yet you can’t access a medication which should have already been available and manufactured here. Ernest Rutherford is turning in his grave I think.

  4. The Prime Minister can admit she took cannabis for fun and yet the Government cannot provide the same to save a young child’s life.
    Where is the kindness?
    WHERE?

    • @ ILCS.
      You write:
      “Where is the kindness?
      WHERE?”
      Well, clearly, it’s in us.
      But the problem is, is that our political administrators ( Very well paid by us which they clearly have no problem with) i.e. our government, isn’t managing this and other similar situations as they should. And by that I mean in a timely, professional, informed, globally conscious, modern thinking and empathetic way.
      Would our government be dilatory in this matter if any one of them had a child suffering similarly but could seek relief for that child in cannabis, currently an illegal substance to be in possession of and to use.
      Perhaps the problem here is that our politicians can do what they like while we must suffer at the feet of their ignorance. Perhaps we should insist our politicians do what we tell them. Not the other way around and clearly voting is a waste of time so it must be direct and street level.
      Since our politic is a CAPITALIST democracy what might the current gubbimint do if the close to 50% of us who voted in favour of new and revised cannabis legislation never turned up for work on Monday morning?
      If we, the majority, don’t get what we want from our politicians? How is that freedom. How is that democratic?
      Andrew Little? Do you have an answer to those questions? If you don’t , won’t or can’t then why do we pay you? How are you acting in our best interests? Are you aware of what’s happening globally re cannabis?
      Can you read? Do you get out much?

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