• Medical Cannabis was legalised in Britain on 1st November
  • However, thousands of parents are still unable to access cannabis-based medication for their children
  • “Mother X” told us in her own words how cannabis is helping her epileptic daughter, and the distress her family is still in due to the British Government failing to deliver on their promise to bring access to those who need it most
  • Here is Mother X and her daughter, B’s, story:

“Our Journey Into Cannabis,” by Mother X

In the early hours of a warm Summer morning 22 years ago, “B” arrived into the world, three weeks late, battered, bruised and swollen.

Despite her traumatic birth, she was put into a cot amongst the other new babies where, a few hours later, I would find her lifeless body. Amongst a haze of alarms and panic, she was resuscitated and put onto a ventilator where she remained for the days to follow.

infant hospital incubator

B spent her first few months being kept alive in the hospital

Whilst our lives fell apart around us, we were ‘questioned’ as to whether we had could have contributed to this turn of events in some way and handed a Polaroid of her in case she didn’t make it.

Against all odds, she did survive and thankfully at this stage, we could not yet know the enormity of the damage that the medical negligence had caused.

Over the next few weeks in the hospital, she would shake and twitch. It was terrifying. Despite voicing my concerns, they were laughed off as “new mother neurosis,” until the tests I requested soon proved otherwise.

Unfortunately, B’s brain damage was widespread and she was eventually given a diagnosis of quadriplegic cerebral palsy and severe epilepsy.

Epilepsy child band

Epilepsy affects around one in every 100 people in the UK. Every day, 87 people are diagnosed.

Her suffering was relentless as the epilepsy which attacked her brain day and night.

At worst, she would have non-stop clusters for weeks at a time, suffering between 30 to 100 seizures per day.

At best, she would only have 20 and still smile. For us, this was a happy day.

Back then, we would administer rectal diazepam to try to halt a bad seizure. Given the unpredictable nature of them, and time being of the essence, it was not always possible to find privacy and was often undignified.

diazepam pills on white background

Common side effects of Valium include: drowsiness, fatigue, constipation, ataxia (loss of balance), memory problems, muscle weakness, nausea, slurred speech, blurred or double vision and skin rash.

I recall unbuckling my seat belt during take-off during a flight abroad in order to administer the medicine quickly enough.

Diazepam never worked for long, and as she grew, it was impractical to get her out of her wheelchair in a hurry, not to mention the health and safety implications for any hired help.

By now, we had tried all the available anticonvulsants, often several at a time. At that time, we were having to force them down orally as she did not have a gastrostomy tube back then.

The seizures continued despite the meds and she had started to fear being held as she was traumatised by the whole experience.

Feeding had become a nightmare. B was poorly from the side-effects of the pharmaceutical medications.

B was always fearful, screaming all through the nights. Her skin began to develop sores that would open and bleed, she was exhausted and her brain was being prevented from developing.

Her constipation became so bad that she would vomit everything, including her medications. A whole week could pass by before she could gain any relief. The cycle would then begin again.

Hospital visits were long, frequent and unproductive whilst we tried to get her seizures under control.

black and white baby and mother holding hands

B’s life revolved around constant visits to the hospital and being “zombified” on pharmaceutical medication

When I was due to give birth to our second child, I stayed in the hospital, living on a chair on the ward for a month, holding B day and night. The ward was noisy and no one slept, causing her seizures to further increase.

I gave birth to our second daughter two weeks later.

My daughter is now down to only around two to five seizures a day [because of medical cannabis], and they are far less severe in nature and recovery is much quicker. Some days, we don’t notice any seizures!
– Mother X

During that time, there was only one neurologist covering several regions. Appointments were so rare that I think we only saw him around four times in all those years.

On the occasion that we were lucky enough to get an appointment, it was noted that we really had exhausted all available avenues. I insisted on taking her to Great Ormond Street for another opinion from their top paediatric neurologist.

Famous British Hospital

Great Ormand Street, London

This went down like a lead balloon, but we went anyway.

Their verdict was that as her brain damage was so widespread, her epilepsy would most likely never be controlled, and she was not a suitable candidate for surgery. So the decision was then ours as to whether to take her off the meds or keep her on them.

We tried for a while to go without the medicine, but panicked and ended up putting her back on one, mainly through fear, not because there was a noticeable difference.

We now had Midazolam as a ‘rescue medication,’ but when we administered it, her reaction was terrifying. She went drip white and was unresponsive with very shallow breathing.

We were abroad at the time and our other children were terrified and crying as we drove around trying to find help. They thought their sister would die right there and they have gone through this so many times before when she has had seizures.

As a parent, it is hard to know who to console the most. Epilepsy affects the whole family, not just the sufferer, and as the years went by we just dealt with this nightmare day-by-day.

Her seizures were frequent and varied and including absences, violent head, and arm shaking and breathlessness. She could remain conscious and very distressed. We were all terrified, but we had to hide it and try to reassure her as much as possible so that she felt safe.

All we could do was time them and wait for them to end.

Sometimes she would look like she had suffered a stroke, as one pupil would dilate and her mouth would drop on one side.

She was exhausted, zombified and, frankly, so were we.

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.

Cannabis medical chemical wheel

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.

Wow!

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.

medical cannabis oil

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.

vapouriser and cannabis

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?

Mother X

*Disclaimer*

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.

References and further Reading