Tannine Montgomery says itâs âirrationalâ that her family has been forced to commit an illegal act by bringing over cannabis oil from Holland to treat their four-year-old severely epileptic daughter.
She and her husband Anthony say they have risked getting a criminal record because they fear Indie-Rose â who can have up to 800 mini-seizures a day â could die in her sleep without the drug.
The couple have made two trips to the country â where medicinal cannabis is legal â since July to bring back supplies in a desperate bid to halt the âsignificant cognitive declineâ in their child caused by the illness.
They are now anxiously waiting on the outcome of their application to the Government to be granted a licence for the oil to be administered to the girl at home.
ButÂ Tannine fears it may be rejected after other families have branded the process âdifficult and restrictiveâ. i reported that the special âexpert panelâ set up to assess cases had refused severely epileptic three-year-old Eddie Braun.
Any risk there may be with medicinal cannabis canât be greater than the risk that my four-year-old wonât wake up one day
The 30-year-old, from Suffolk, said: âIndie learnt to talk but has now gone backwards with her speech. She became a zombie on the anti-epileptic meds and we had to stop them, plus they can cause liver damage.
âHer seizures have been greatly reduced since we started the cannabis oil. Indie has uncontrollable epilepsy. Any risk there may be with medicinal cannabis and childrenâs brains canât be greater than the risk that my four-year-old wonât wake up one day from having had a severe fit in her sleep.
âItâs completely irrational that weâve been forced to break the law by bringing it over from Holland.â
The mother, who had to give up her job as a gardener to become Indieâs full-time carer, said she has to sit outside her daughterâs school all day to be able to give the oil.
âIndie just started school this month. Itâs not the schoolâs fault, they canât allow anyone there to give it to Indie because itâs illegal,â she said.
A couple of months ago,Â the Home Office announcedÂ that doctors will be able to legally prescribe medicinal cannabis to patients in the UK from the autumn.Â In the meantime, an expert panel was set up in June to review such cases which have to be deemedÂ âexceptionalâ.
It followed a public outcry surrounding the case of Billy Caldwell, a 13-year-old with severe epilepsy, after his cannabis oil was seized at Heathrow Airport.
Tannine is one of five families who have made applications.Â So far, Billy, six-year-old Alfie Dingley, and seven-year-old Sophia Gibson are the only children who have been granted permission.
Alfieâs mother Hannah Deacon,Â who has lead the campaign groupÂ End Our Pain, spoke to i about how she is helping 16 families who have not been allowed to apply for a licence as they do not have their doctorâs approval â a requirement set by the panel.
Indie was born with Dravet syndrome, a type of epilepsy with seizures that are often triggered by hot temperatures or fever and has had fits since she was five months old.
âMy son is proof medicinal cannabis worksâ
Hannah Deacon became the first person to legally enter UK with cannabis oil to help her son Alfie.
The six-year-oldÂ typically hadÂ 150 seizures a week. A brutal attack would last up to 25 minutes.
Desperate to save him before he suffered lasting brain damage,Â his mother moved her family last year to Holland for five months so he could be prescribed medical cannabis, where it is legal. After six weeks the boyâs condition dramatically improved.
But it wasnât legal in the UK and she began her high-profile campaign to battle for her child to be access it on the NHS â and in June a special licence was granted and she became the first person to legally enter UK with cannabis oil. Now she has revealed Alfie has now been seizure-free since then and is even learning to ride a bike.
âAlfie has a normal life now,â she told i. âPreviously his epilepsy wasÂ uncontrolled and he was in hospital every week. Now he hasnât set foot in a hospital since June and heâs had no time off school. My son is proof medicinal cannabis works.â
Over the next few weeks we will be putting her on the THC type, and we hope that will make her completely seizure-free
Tannine has the backing of her daughterâs paediatrician, after he saw that cannabis oil had brought an improvement in the childâs fits.
âPreviously weâd tried the high-street cannabis oil that is legal here which helped some of the time, but not all, because it is not medicinal cannabis,â she explained.
âWhen we took Indie to Holland she had had a fit every day for two weeks before and even had one on the plane over there.
Whatâs the difference between medical marijuanaÂ and CBD oil?
Cannabidiol (CBD) and tetrahydrocannabinol (THC) are the two most well known cannabinoids found inÂ cannabis.
Medical marijuana contains THC, the psychoactive compound that gets you âhighâ.
CBD oil, an extract from industrial hemp (a variation of the cannabis plant), contains no, or very little, THC.
While almost all cannabinoids are controlled substances under the Misuse of Drugs Act, CBD is not and it is therefore legal in the UK.Â The Home Office says that it can contain a maximum THC content of 0.2 per cent.
CBD oils are available in the likes of health food shops such as Holland & Barrett. In 2016, the Medicines and Healthcare products Regulatory Agency (MHRA) said that CBD products, if advertised for medical purposes, needed to be licensed. Many are therefore sold as âfood supplementsâ.
THC and CBD seem to be effective against seizures, according to Epilepsy Research UK. But experts say further research is needed to determine the effects of THCÂ â long associated with mental health problemsÂ â on young epilepsy patientsâ developing brains.
For these reasons doctors and scientists have focussed on CBD, which doesnât seem to carry these risks.
Epilepsy Action warns that unlicensed preparations of CBD-based oil may not be produced to the same standards as licenced CBD-based medicines and may interact with a personâs epilepsy medicine.
âWe had to start her off on low dose, as we agreed with her doctor here. Straight away she went five days without a fit which was a first.
âShe still has fits but they are milder and she goes several days seizure free now. Sheâs now around 75 per cent better.
âWe hope increasing her dosage that will make her completely seizure-free.â
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