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Minnie Granger, two, from Cardonald in the city’s Southside was facing around 100 seizures a day before being prescribed cannabidiol (CBD), Glasgow Live reports.
Hannah, the tot’s mum, says that Minnie is no longer having as many smaller seizures but is still experiencing the most debilitating ones, which can leave the toddler unable to breathe for nearly a minute.
She believes that the psychoactive compound in cannabis THC could reduce seizures and improve Minnie’s quality of life.
Her mum believes that the drugs could improve Minnie’s quality of life (Image: Supplied) Despite medical cannabis being legalised in the UK in 2018, the NHS says that the risks linked with THC “are not currently clear” and that more clinical trials must be done.
Minnie was diagnosed with this rare condition at just eight weeks old when doctors discovered that she was missing 21 genes, many of which were related to epilepsy.
The condition has left Minnie experiencing six different types of seizures. She sleeps around 19 hours a day, is heavily medicated and cries when she is awake.
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She mostly suffers from a seizure that tops her breathing for up to 50 seconds and happens multiple times a week. For each time Hannah has to stimulate Minnie’s chest to get her breathing again, place her on two litres of oxygen, record the seizure and time it.
Hannah has described caring for Minnie as a full-time job with husband Gavin and big brother Finley,12, also acting as carers.
She told Glasgow Live: “Minnie’s seizures are so bad that she cannot be left alone.
“If I go to the toilet, she comes with me, when I’m doing washing, she’s with me.
“These breath-holding seizures are so horrendous. I have seen her saturations completely flatline.”
The tot has been placed on nine different anti-seizure medications, but Hannah says that doctors believe she is resistant to them.
This means that the chances of any anti-seizure medication controlling her epilepsy are very slim.
The family have been told that Minnie will never be seizure-free and will likely only survive to early adulthood.
Hannah said: “This is a drug that could potentially save Minnie. She’s supposed to be starting nursery and doing all these things, but she’s just sleeping full time.”
Minnie currently usesEpidyolex, a CBD oil derived from cannabis that does not contain the THC compound responsible for a cannabis high, provided by the NHS.
Hannah said: “Before she started Epidyolex, Minnie was having over a hundred seizures a day.
“She was having tonic seizures where her arms would be stiff, she was having clusters of seizures all day long, spasms, absent seizures.
“She started the CBD and the tonic seizures and spasms, and they completely stopped.
“The CBD has done something for her seizures, but it’s not enough to take away the big ones.”
She says she is unable to obtain a private script for the higher THC medication and that others have been forced to go to Holland to obtain the medication.
She added: “You’re being put in a position of having to be a criminal to save your child’s life.
“I know getting Minnie cannabis oil isn’t going to cure her—it’s not going to change the fact that she’ll die in early adulthood—but it’s going to make that time on our side a lot easier if she’s not having intractable epilepsy every single day.”
She believes that it will be years before the medication is approved and made for children by the NHS.
She said: “Minnie hasn’t got years to wait. She could be dead by then.
“She has such bad side effects to anti-seizure medications that putting her on a new anti-seizure medication could kill her.”
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Minnie is currently being treated with potassium bromide, which remains unlicensed in the UK and is used when all other treatment options have been unsuccessful.
She continued: “If they can put her on potassium bromide, which is unlicensed, why not cannabis oil with THC that is also unlicensed.”
Hannah has been encouraged by others who have posted on social media the improvements in children following treatment with cannabis oil containing THC.
She believes that the potential benefits to her daughter’s quality of life outweigh the risks that the drugs could have.
Hannah believes the cannabis oil would make Minnie more aware and reduce the frequency of her seizures, adding: “This medication is sat there, ready to go, and they’re not letting us have it.”
There will be two nationwide trials of the drugs this year, according to Epilepsy Action, and Hannah is hoping to get Minnie early access to the medication ahead of the trials.
She said: “Minnie can’t wait for access to the trials in September, and this is a viable route.
“Why not give it to her now before it’s too late?”
Hannah praised the UK-based campaign group End Our Pain which campaigns for the legalisation of cannabis-based medications for children and is supporting the family.
“}]] A Glasgow mum is fighting for the cannabis-based drugs that “could potentially save” her daughter from terrifying seizures. Read More
