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.

dravet syndrome high CBD cannabisFor 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 Cry  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…..

[quote]

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.

http://scientopia.org/blogs/neurodynamics/2010/10/15/repost-the-pharmacology-of-marijuana/

[/quote]

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.

14 thoughts on “Dravet Syndrome and high CBD cannabis treatment

  1. Victoria Hokulani Latenser says:

    I’m so excited about your story. Your love of your children could change this very bad law. I too, have a similar story. There are many mothers who are rejecting pharmaceuticals and going for the plant that one can grow themselves. This is what God intended. Unfortunately we are living in cruel, unjust, and greedy paradigm.

    • campo cultivator says:

      Its too true Victoria .,.. and also unfair as well that we can see evidence of treatments working on one side of the atlantic, and on the other desparate patients or the parents are denied these by law. Thank you so much for your support ..

      • Geoff Hoyt says:

        This is from a daddy; Lilly is 12 and 1/2 and has been diagnosed as having Dravet Syndrome. She had a grand mal when she was 4 months old, then nothing until she was 2, then absence seizures developed without relent; over 75 daily, more in her sleep, waking up with circles under her little baby eyes. There is nothing more gut-wrenching or heartbreaking than being a parent and having to watch your little angel suffer. As a dad, since daddy’s are supposed to be able to fix anything (and by the way, my wife is actually the one who fixes all of our appliances and tech problems), it has been a journey filled with joy and regular, breath-taking desperation. Lilly has been from Yale-New Haven to UVA, to Hartford Children’s, to Dartmouth-Hitchcock, to most recently, Boston Children’s. She’s had more blood tests, telemetry tests, MRIs and CAT scans than any little girl should ever have to endure, and that’s not even mentioning the utter cauldron of pharmaceutical treatments she she still fights through – every day. And I mean EVERY day. There isn’t a day that goes by when she doesn’t fight us relentlessly to take her disgusting tasting medicine – NEVER have these pharma greedy giants EVER lifted a FINGER to spend some of their precious massive profit to help make the medicine their HUGEY profiting from to accommodate children with epilepsy! God forbid should they take a fraction of one percent of that profit and make their medicines tolerable to children. Haven’t they ever heard of bubblegum and cherry flavoring??? Their one-dimensional approach that ALL pediatric neurologists resign themselves to, tacitly approving of the sacrifice of the horrifying long-term side-effects in order to perpetuate a discipline of medicine that seems FAR more eager to hyper focus on short-term treatment via dispensing of psycho-pharma medicines also used for adult bi-polar and schizophrenia, is disgusting. And I they all cite that there’s a greater need to stop the seizures than allowing them to continue, while they don’t even know themselves how damaging or otherwise every seizure actually is, notwithstanding serious grand mal seizures…..knowing that some of these medicines actually exacerbate seizures. We tried the Keto diet when Lilly was 2 – far too young to attempt such an extreme diet; mayonnaise in a leaf of lettuce, A tab of butter and drinking heavy cream, all was far too traumatic, even though, we stopped the diet after 2 weeks -and didn’t see a seizure for 8 months……but they returned without explanation or relent. These pharma treatments have nearly torn our family and home life apart. Actually, they have torn it apart, we just happen to be strong in our faith, a little nuts and totally committed to providing Lilly and her brother (both on the Autism spectrum) a loving home, a shot at a happy childhood and the best possible chance at the most normal (whatever that is) and well- adjusted, confident and independent life possible.

        I’ve already said a mouthful, my apologies. I applaud your efforts for your boys and your resolve – and your stoic motherly love. This CBD treatment sounds like a mini-miracle treatment; we watched the CNN video of the little girl who had Dravet and while we remain hopeful, as you know well with Dravet, you/we don’t have the option of being anything other than “cautiously optimistic” about “the next greatest thing.” Regardless, like you, we will pursue ANY and EVERY treatment worth exploring. Last spring, Lilly had a “4-D” (yes, 4-D) MRI @ Boston Children’s, to hopefully find a “localized” legion that was/is causing her seizures; if they found one, she would have been a candidate for surgery, with a 90%+ FULL CURE rate. Sadly, her seizures were/are generalized and emanating from the unexplainable abyss in her brain. On Monday, we will be discussing CBD with Lilly’s neurologist and pressing the exploration hard. And if the light of day emerges on this front and there’s a legitimate chance at dramatic, non-pharma improvement, we’ll move to Colorado if we have to and start a new life in the land of the Rockies. Keep charging and keep the Faith.

  2. sharon ware says:

    i just saw your story and i have comments. We are using a hybrid plant that is equal thc and cbd then we process special we freeze the nugs we freeze the solvents and then grind down and bke at 250 for 20 minutes even thirty if you want it pulls the thc out and enhances the cbd the young man i am working with is 27 and his mom was at her end She was ready to let them do surgery on his brain when she came to us. Now he has 1 or less per day is active and happy and working with dad again. I think you should contact me and i will give you the name of a mutual mother or two

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