Dravet Syndrome and high CBD cannabis treatment

Dravet Syndrome and high CBD cannabis treatment – Searching for the CBD, part II

All of us who are parents dread the news that our children may be seriously ill. In our secret hearts we see leukaemia in frequent nosebleeds, bulimia in a dieting teenager. For most of us though these fears are only anxiety; the nosebleeds turn out to be caused by dry air, the rash by a virus. Imagine therefore the bravery needed to face a potentially terminal diagnosis. Add to that the discovery that a treatment may be possible, but that not only is it illegal purely because of your geographical position on the planet, it is as a result, almost impossible to obtain.   I will post another piece on “CBD” and links to information regarding its treatment for Dravet syndrome as well as other illnesses. But for now, please read this, in her own words:  

A Mother’s Story

My 5 year old boys suffer from a severe type of epilepsy, called Dravet syndrome, which is medicine resistant and thus the prognosis is bad/fatal. A panel of neurologists told me that they probably would not make it till year 5 – and if they did, they would be dribbling in a wheel chair. As a mother, I could go 2 ways:

1. Dig a hole in the garden and pretend it would all get better or

2. Fight against the prognosis. I chose the latter option.   This link explains about the Dravet syndrome

  What it doesn´t really go on to explain is the ongoing effect such a number of seizures can have on the development of a small child´s brain and body.

For one and half  years, my boys had a little helmet on as they each had about 200 small seizures per day. The type of these seizures made them lose consciousness in a split second and they fell to the ground – if they walked or ran, they would hurt themselves even with the helmet so I had to hold their collars whenever they were on the move (try and convince twins to move in the same direction!!) . Every two weeks or so, they would have a big seizures which usually required a hospital stay and IV drugs to stop the seizures. This meant that my mobile provider determined that the emergency number was “my best friend” and the number which I called the most

They were then put on a combination of 3 medicines which stopped the seizures but took away their balance and coordination skills. Also, the side effects were fatal and 3 weeks later, one of my boys were admitted with Stevens-Johnson syndrome. This is a severe skin condition, frequently caused by medications (as in my son´s case) in which the skin´s layers separate from themselves. Here is a link to images, but it is not for sensitive people.     Seeing my little boy like this made me beyond furious – but in a situation like this, who am I supposed to yell at???  The epilepsy is due to a de novo gen-mutation and I can’t blame anyone. Nevertheless, my gut reaction was to blame the neurologists and I refused to listen to their pessimistic diagnosis. I started my own research and spent the next year fighting the authorities as they wanted to continue the heavy drug regime in order to suppress the seizures. I was stubborn and refused to listen and instead I kept researching the subject whenever the boys were asleep and I had a couple of hours to myself. Suddenly, I found a forum in America where the parents of Dravet children (like mine) experimented with medical cannabis and to my big surprise, it seemed like it worked. However, nothing is supposed to work on Dravet syndrome so how could an ancient plant have such a great effect? Yes, I mean great effect because it doesn’t just suppress the symptoms but it also seems to cure the cognitive delay…. It seems like a miracle treatment for this illness!!! I didn’t want to keep my hopes up so I just kept researching but no matter where I looked, the results were the same =

Medical cannabis is almost a cure for Dravet patients.

However, now comes the tricky part….. it’s not just any type of cannabis – it is a very rare and specific type with almost no THC (the psychoactive in cannabis) but as much CBD as possible….. And we all know that this plant has a reputation of something different than CBD…..

CB1 receptors affect the function of the presynaptic terminal. When CB1 receptors are activated, they signal through G proteins to close calcium channels, preventing entry of calcium into the terminal. Calcium is needed for vesicles to fuse with the membrane and release inhibitory neurotransmitters into the synapse. So CB1 signaling stops inhibitory neurotransmitters from being released to the postsynaptic neuron. CB1 receptor activation also results in opening of potassium channels. In a resting neuron, these channels are closed. Outflow of positively charged potassium ions leads to increases in the net negative charge across the membrane. This is called hyperpolarization, the opposite of depolarization. As you might imagine, since depolarization causes neurons to fire, hyperpolarization keeps a neuron from firing. This further decreases the chances that neurotransmitter will be released from the presynaptic terminal. There are some other effects too, which I won’t detail here.

The net result is that the postsynaptic neuron signals back to stop neurotransmitter release from the presynaptic neuron. This kind of two-way communication is not a common thing in neurons, and the presence of this system indicates a need for very fine regulation of neuronal firing in response to a variety of inputs.


So now begins the hunt for high CBD cannabis so my beautiful boys can finally get a happy and healthy life… I can’t believe that there is a natural plant out there which allows my children to run more than 20 meters without falling to the ground in a seizure or dance to music without me having to stop them to prevent a seizure – just two examples of things my children can’t do due to their condition. They get frustrated when they are not allowed to play ball, be in the sunshine, dip their feet in the water or cycle more than 10 minutes in one go. Whenever they have a seizure they cry and cry afterwards and ask me if I can’t find some better medicine…. My heart aches and has broken many times during the past 5 years – and I can’t deny my boys a happy normal life anymore. As a mother, it is my duty to provide the best possible conditions for my children. And that is not lots of pharmaceutical medicines which take away balance, coordination and personality – and instead give them the worst side effects possible. But instead it’s a little (well, not that little) green plant which nature has provided, where the side effects are not Stevens-Johnson!! Growers Guide to Cannabis has recognized my problem and as you can read on the site, they have started a project to help me and others in similar situations. As a person who has been on several roller coasters due to my children’s syndrome, it is a miracle that someone else has offered to help. The road is very lonely as the normal thing is to be healthy. The majority are shocked, sad and then happy for their own luck – which is understandable and a normal way to react.

Is medical marijuana the cure –all of all illnesses? I doubt it. But for many illnesses it may help a percentage of people either get better, or manage their disease more easily. For those of us living outside the US or Canada though, that ease of symptom is forbidden by law and extremely difficult to obtain. We’re luckier than most. The Growers Guide Team have between us the ability and access to some of the resources to pursue this search for the high CBD; to grow and get tested strains in the hunt for a 20:1 fairly stable CBD:THC ratio. Why would we? For the simple reason that we fully respect this mother´s determination to do the best for her sons, no matter what the law of her individual country states. Is family above the law? How far would you go for the chance to protect your children? And if the choice is between life and ..   This isn´t an easy story to read. I’m hoping its going to have a happy ending. Those of you who have read “Searching for the CBD” will know that we are doing all we can to make that so. If you have any comments or information that may also help, please leave them. We’re in the process of drawing up an article on CBD and all relevant well researched informative links would also be helpful as reference points for anyone coming new to the subject.