WATCHING their son go from having more than 50 seizures a day to just two in a month is â€śincredibleâ€ť for Shaileen Roberts and Harley Elward.
The Midland parents attribute two-year-old Zavierâ€™s promising results to Cannabidiol (CBD) oil, a prescribed treatment made from cannabis theyâ€™ve administered orally twice daily over four weeks.
Ms Roberts said the improvement in Zavier, who was diagnosed with infantile epilepsy, was â€śamazingâ€ť and better than he had from taking any other medication.
â€śAll the medication we had tried just wasnâ€™t working and so his neurology doctor, Dr Simon Williams from Perth Childrenâ€™s Hospital, thought it was time to try the CBD oil because we had been asking for it since Zavier was diagnosed but we were trying other options before resorting to it,â€ť she said.
â€śBefore Zavier took the oil, on a good day he was having about 20 seizures and on a bad day about 50 plus.â€ť
Babies with infantile epilepsy, or West syndrome, often experienced developmental delays, with each cluster of seizures affecting an infantâ€™s ability to remember developments or things theyâ€™d learnt before the epileptic episode.
Ms Roberts said although Zavierâ€™s development had been varied, with him having to relearn skills once he had an epileptic episode, the oil had decreased his seizures and therefore improved his rate of reaching milestones.
â€śHeâ€™s been on the CBD oil about a month and in that time heâ€™s only had two seizures,â€ť she said.
â€śItâ€™s very promising, the improvement is amazing because heâ€™s not irritable, heâ€™s more alert and can sit up by himself, he makes different sounds everyday, and is actually happy and smiles.â€ť
Zavier takes two other medications for epilepsy, but with no evidence of any side effects from the CBD oil, Ms Roberts said he would be whined off them and have his CBD oil dosage increased.
Each vial of CBD oil, dispensed from Pharmacy 777 in Midland which sources it from Canada, costs about $550 and lasts Zavier 56 days.
Ms Roberts, who is Zavierâ€™s full-time carer, said having to live off one income was tough and relied on family and donations from a GoFundMe page to help fund the treatment.
â€śPeople need to be more aware of how much CBD oil helps children,â€ť she said.
â€śChildren like Zavier are having amazing improvement from the treatment so Government should back it and help fund treatment.â€ť
Health Minister Roger Cook the Commonwealthâ€™s Pharmaceutical Benefits Scheme (PBS) didnâ€™t currently subsidise any cannabis-based products, which left patients to pay the full costs.
â€śIdeally, cannabis-based products will eventually be considered for the PBS â€“ the decision on this is made by the federal, not state, government,â€ť he said.
â€śFor high-cost medicines that are not on the PBS, there are mechanisms to support compassionate access via public hospitals in WA.
â€śThis access is strictly limited and decisions are made based on individual cases by the hospitals and doctors themselves, according to the needs of the individual patients involved.â€ť