When she reached 17 she was dismissed from paediatrics and assigned a ‘one size fits all’ neurologist who we practically begged to consider B for a trial that was being conducted with CBD for epilepsy.
He said “of course he would look into it,” but as the weeks went by, so did the trial and we heard nothing back. When we asked “why?” we were then passed off with some excuse.
Feeling ignored, helpless and angry, I began to gather as much information as I could to help my daughter as it seemed that no one else would.
I contacted many professionals and parents around the world, joined groups on social media and read study after study about the effects of CBD and THC.
Cannabinoid Wheel: there are over 100 different cannabinoids, each with different potential medical properties
I ordered from several reputable suppliers including Endoca and the Dutch Natural Healing Company whom I had thoroughly researched.
There are different strengths of oils but I went for the strongest, a 15% hemp oil, based on all the research suggesting that epilepsy usually needs high doses.
At first we started slow, as I didn’t know exactly what would happen and although I’m a relatively well-informed woman with a mind of my own, I was still a little uneasy due to all the negative propaganda we are fed about cannabis by the media in order to stop us from healing ourselves and rely on their pharmaceutical products for profit.
I was so nervous on the first day I administered it to B, and I had to try it myself as B is non-verbal, otherwise, I couldn’t understand how she would feel.
My anxiety melted away and left me with a clear mind and B…?
She did not spontaneously combust or anything of the sort.
So we raised her dose from about 4 drops to about 9 drops a day . ( each drop contained 5mg of CBD).
These drops go under the tongue for best effect but for those like B who gag or choke they are fine to be mixed in something like honey or Nutella type spread.
Also, Dutch Natural Healing sent me a pump of water soluble CBD so that I could mix it in water and administer via her feeding tube.
Within days she was more alert, her absences halved along with some of her other seizures and her recovery was much quicker.
Her muscle tightness reduced and she would show me by wiggling her ankles and raising her arms whilst she laughed in amazement.
She could not do this before.
This oil was the closest thing to a miracle and hope began to live in us where fear had reigned for 20 years.
As the dose increased eventually to almost 200mg Endoca CBD per day (this is common for epilepsy), her seizures decreased and I was now encouraged to see how we might get rid of some of the more persistent seizures BY adding a little THC.
This is illegal in this country due to outdated laws based not on science but on lies and greed.
FECO: Full Extract Cannabis Oil – the miracle which is giving B her life back
I spoke with other parents and studied and studied. Their stories were too positive to ignore and too many to be a coincidence.
Fuelled by hope, I went and bought a dry herb vape, a small device that you can heat cannabis to a vapour without any tobacco. I attached a piece of tubing and a nebuliser mask and the next time she had a cluster of seizures, I took the plunge and administered a couple of puffs down the tube with the mask near her face.
The effect was immediate, showing a marked reduction in her twitchiness, she was far less anxious and more relaxed. That was a success, but I knew that as it had an odour, and It wouldn’t always be ok for me to inhale any if I was driving, then it wasn’t possible to administer this way long term.
Cannabis can be vaped, removing the negative medical potential of combusting with heat
Before long, I had learned how to make very high-quality medical cannabis oils, like coconut cannabis oil and full extract cannabis oil (FECO). Again, after testing on myself, keeping notes and tweaking doses here and there, we found cannabis to be the most successful treatment she has ever had.
FECO Is made using a rice cooker and either ethanol or isopropanol and is very easy to make.
The cannabis infused coconut oil is just as easy, if not a bit safer.
B is down to around two to five seizures a day, but they are much less severe in nature and recovery is much quicker. Some days we don’t notice any seizures!
She has a small amount of coconut cannabis oil, about 7.5 ml twice a day to maintain this with zero side effects.
She has this as a suppository as this way of administering eliminates any ‘high’ or ‘sleepy’ feelings, but during particularly bad clusters, or her bad tremor weeks, I add some FECO (made with a 2:1 CBD-THC strain of cannabis) at a dose of 1g/1ml a day, whereas at the start I would use very small amounts.
This helps stops seizures on those days where nothing did before.
I always leave at least two hours between any other medication and CBD/THC in order for it to not interfere with them. The liver processes CBD first, so if I leave two hours then the usual medication will be processed too.
She is only on a very low dose of Carbamazepine now and I think she will be weaned off that too.
Her bone pain is also helped massively by the addition of THC, it even helps reduce her spasticity. I have had to get to know my daughter all over again.
I told a GP what I was doing, and the results, so I asked her to apply for Bedrocan as this has the THC in it that could help her because I don’t want to have to be criminalised and sneak around to help my child.
The GP told me that she agrees and understands, but that she wouldn’t apply as they’re uncomfortable about it.
I’m sure she wasn’t as uncomfortable as B was while having 100 seizures a day, but that’s the state of affairs. Add that to the new Government guidelines which state that only under 18’s can apply, what choice am I left with?
Everyone should have access to cannabis before being forced to take a cocktail of mind-numbing medicines or surgery!
I will not condemn my daughter back to a life of hell, just to remain within the law.
I would rather my other children saw me through bars, knowing it was because I chose not to let their sister suffer when the government would rather line their pockets and watch her die!
For loving my child and protecting her from suffering harm and very possibly death, I could be sentenced to prison for 14 years.
Who are the real criminals?
This article is an in independent testimonial and story from a British mother. It is *not* medical advice and if using cannabis or making cannabis oil at home please do so within lawful jurisdictions.