“She was a zombie” - kiwi family’s horror story of $600 epilepsy medicine.
Auckland parents of Hollie MacCullaich were shocked after the six month old started showing signs of a form of epilepsy which causes lasting brain damage.
Now two years old, Hollie’s seizures became a weekly occurrence, with mental development effectively halted at six months old, and parents being told permanent damage was occurring.
“After you hit the twenty minute mark, that’s when brain damage occurs… and Hollie has had over a hundred seizures that have lasted longer than that,” mother Heather told New Zealand publisher Stuff.co.nz.
“She was effectively a walking zombie,” added father, Frank, with parents feeling helpless as many seizures lasted over an hour.
Doctors gave Hollie a suite of different medicines to try at dosages high enough to risk serious side effects including liver scarring and further delayed development and while they reduced the number of seizures they were not an adequate solution.
After specialists recommended clobazam the family enquired about CBD, shown in clinical studies to be effective but not yet government funded in New Zealand.
However, while New Zealand allows CBD it must not be contaminated with more than 2% THC, lower than the 3% threshold set by other countries, therefore ruling out many suppliers.
Like the United Kingdom ruling that only pure CBD with no THC should be permissible, New Zealand experts were concerned at the effect of THC particularly in the developing brain.
Frank noticed there were a few companies selling compliant product with low enough THC content but were “exorbitantly expensive” costing NZD$600 per week.
The family have had to begin using an extract with 3% THC which causes other problems, both legal and medical.
University of Otago researcher Associate Professor Lynette Sadleir, who was part of a multinational clinical study (published in the New England Journal of Medicine) into treating children with Dravet syndrome explained that CBD has been shown to be an effective treatment for epilepsy, but THC has been shown to actually increase chance of seizures in high-dose animal studies.
Frank reports that while Hollie’s frequency of seizure events had increased, as expected with THC, the severity and duration have decreased, and are now less than 20 minutes meaning she is out of the risk area for brain damage.
Frank explained “We’ve seen a complete transformation.”
“She’s interacting with the world, she’s trying to talk, she engages with you looking into your eyes, she grabs anything she can get her hand to.”
“She’s now present in the world instead of just existing.”
“This is our vision with chemically pure CBD” said BioPharm product manager, Matthew Bowden, “especially for countries like United Kingdom and New Zealand where families need dependably pure CBD without THC, and they need it to be affordable, everybody who needs it should have access.”
