Child in Canada With Neuroblastoma Medically Blacklisted for Choosing Medical Cannabis

Growing Charlott's web marijuana

For my second post for #Blogmas 2017 I came across a story that every mother and father should read! A mother, Mandy Drew in Alberta Canada was told her daughter, Cheyenne was hopelessly ill and that she should “take her home and create memories.” Doctors threw up their hands and gave up on the little girl after she continued to worsen in traditional chemotherapy. Tumors were wrapped around vital parts inside her body, making the situation that much more complicated.

Her mother, faced with no options from her daughters treating professionals considered medical cannabis given the fact that at this point there was really nothing to lose. If she’d done nothing death was a 100% certainty! Although a little skeptical at the outset, Cheyenne’s mother decided to give it a try, but she had no idea that her daughter would be medically blacklisted nor the level of hostility she would receive from the medical establishment. One doctor who during a phone call asked Mandy what she was doing in her alternative treatment literally hung up on her when the mother told her she was treating her with cannabis oil.

Despite the rejection and anger directed at her for this treatment choice, the Alberta mother reported that her daughter began responding with just 1 gram per day. She began to notice her apetite return, her mobility improve, and eventually it was discovered that her tumors were calcifying (a sign of apoptosis, the scheduled death of the cancer cells)! Now at age 4 and having already beaten the odds, Cheyenne functions like any other 4 year old, is symptom-free, and doesn’t even have any awareness of her diagnosis.

Her mother appeared on this radio show which was posted to Youtube on January 24, 2007 to speak about her experience. The host also gives some very interesting information from research suggesting that many illnesses may be caused by a deficiency in the body’s own cannabinoid system. Apparently there is a lab in the US offering a test to see whether your illness(es) are due to this deficiency or dysregulation. Watch the video for yourself to hear this woman and her daughter’s amazing story!

Yes, medical blacklisting happens to children too, even dying children, and it’s a shame that doctors and the corporations they work for are so arrogant that they would turn their back on someone like this when they have nothing better to offer. Corporate healthcare has in effect taken the patient out of the equation, when in fact the patient (or parent when the patient is a minor) should have the last word when it comes to treatment decisions, and more often than not, the patient is correct about what is likely to work.

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Whatever a doctors opinion on cannabis or any other treatment for that matter, he or she should keep an open mind and support the patient’s treatment decision. Most patients who have decided on a particular treatment they want to pursue do so after alot of careful reading, research, and thought. Therefore they should not be treated as crackpots or loose cannons when approaching their doctors.

These patients are already suffering and it only increases their suffering for a doctor to work at cross-purposes with a patient that he has stopped or refused to start treatment on. It is not only heartless, but unethical for a patient’s treating professionals to ostracise a patient for doing what they have to do to save their life or the life of a relative who is in their charge. It may be OK with a doctor to throw in the towel, but it shouldn’t be, especially when there are other things to try which he/she either have not looked into or flatly refuses to consider.

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A doctor or a healthcare system should never be a gate-keeper between a patient and the possibility of improvement, preservation of or quality-of-life. To do so is in clear violation of the Hippocratic Oath. Healthcare professionals must keep in mind at all times that they are in this field to help others. What they do in the course of any given day should not be about their own needs and biases, but should be undertaken for the sole benefit of the patient. Sometimes that means being willing to put your own opinions aside and giving the patient the means to reach further without impedence.

Adventure

The practice of medicine should be a selfless act, not one whose primary motivation is to save face. In this day and age physicians are not expected to know everything, (and get a clue guys, the cat’s out of the bag! Patients are well aware that there is no way that a doctor seeing patients all day long back to back has the time to read up on all the latest research. Many patients now know how to read medical journal articles and have to become experts in their own conditions in order to ensure they get the best treatment available, so it’s high time that was acknowledged.

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 And medical professionals, The crackpot defense no longer holds water anymore. Instead of shutting patients out and shutting them down when they engage you in discussion about a certain treatment, or diagnostic possibility, instead of writing backhanded and snarky comments in a chart, why not treat them like the respected partner that they are and approach this undertaking as a challenge to be solved rather than a threat to your authority.

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It’s not personal. It’s not about you. It’s about their best health, and their life.

 

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Yummy Treats that Treat What Ails You; Not Waiting For Hell To Freeze Over

500 Mg. CBD Infused Chocolate Covered Pistachios and Free 50 Mg Hard Candies DSC_0010

 Made from hemp with no THC content to make you high, many CBD edibles are not considered an FDA-regulated substance and are legal in all 50 states!  CBD (Cannabidiol) is basically considered a  neutraceutical or nutritional supplement. Medical cannabis is growing in acceptance each day offering another natural alternative to traditional medicines. Many patients find they need less narcotic pain medication when using this regularly.

I decided when things began to go south that it was finally time to take things into my own hands obtain some medicine that doesn’t require a prescription from Dr. Slow-as-Molasses.

This has been on my to-do list for some time but with everything I’ve had on my plate and all the evaluations to set up and all the fires to put out around Emory and testing and orders, etc. I just now have gotten around to putting in an order for some edible CBD (Cannabidiol) Cannabis infused items.

I bought 2 packages 500 Mgs. each of CBD infused chocolate covered pistachios. The woman who made them, Carrie, of CBD The Healthy Choice on Etsy was very helpful and recommended I start out with 2 or 3 nuts (which is about 5 Mgs.) and work up from there until I notice relief. I started with 3 yesterday. I even got 3 free hard candy hearts, each of them 50 Mgs. a piece as a bonus for my purchase!

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This is my first time trying edibles and I must say they are delicious! I couldn’t even taste the CBD! For those of you thinking of trying this option I’ll continue to post in my blog how it goes as I ramp up.

It was hard for me to limit myself to just these 3 because they were so tasty, but it’s important to remember that just as with any other medicine they can have some side-effects if you overdo it. Depending on the strain used some types can be adrenergic, especially the Sativa strains, and patients who were overzealous have on occasion ended up in the emergency room. Indica has a more calming effect, but at the time of this writing I’m not sure what variety was used in the making of these I purchased. I’m in the process of obtaining that information so that if this relieves my symptoms I’ll really know what works and can keep track. Eventually I’d like to compare several strains.

Since I don’t know yet how my body will react I think I’ll just increase it one nut a day. Today I’ll take 4.

This is very hopeful, and I could really use some hope right now. Since I haven’t been getting much in the way of real treatment other than pills to control the individual symptoms this powerful medicine just might make what I have to face alot easier, both physically and emotionally. Maybe in addition to helping my movement disorder it will help reduce my fear so that by the time I see the movement disorder specialist in July I won’t panic when he does his exam.

I want to wait a little for the jitters to die down after seeing the one at Emory but have a possible lead on a local neurologist outside of Emory. I’m also working on getting something set up with Vanderbilt too in order to get my Dysautonomia officially diagnosed and finally put all this controversy to bed. Emory just seems to bring more drama and it’s really exhausting. I hope I can find my way out of that system soon, at least except for seeing my pulmonologist and maybe for a few targeted services.

There is a center in Texas I contacted as well that does the Tilt table test and while it sounds like they do a fairly state of the art one, they don’t seem to do many of the other autonomic tests that Vanderbilt or Mayo does, and Texas is an 11 hour drive, so if they miss it that’s a long way to go for nothing. I’ll have to see how feasible that will be in terms of logistics. Which ever clinic I choose to do the assessment I really need to come home with a piece of paper for it to be worth my while.

I’m beginning to have a pretty clear idea now what the global underlying condition is encompassing all my symptoms, (Myoclonus, Dystonia and Dysautonomia included). It has been a long process of narrowing things down but I think I’m closing in.

I guess most of my current doctors will feel disgruntled that I figured it out before they did and have bruised egos having been outdone by a “mere” patient, but the truth is if they really care (or ever did) they should be happy to have somebody figure it out and start treating it sooner rather than later whether it’s me, or the local home repair guy. I’ve always been several steps ahead of them and when you’re suffering and most of the doctors are sitting on their hands, sometimes you’ve just got to take the bull by the horns and work with what you’ve got.

Given that I may not have complete control of what my body does, now or in the future, at least there are a few things I can control and that is some comfort.

Another blog called The Cannabist reviews various such products. The writer, Brittany Driver, lives in Colorado, home of one of the first states to fully legalize. In her blog she documents her own experience in using edibles for her back pain. Hers did contain some THC though (approximately 53%), as Colorado’s laws are more lenient about that than many states.

Stay tuned to see the results of my little experiment.

Please leave a comment below even if just a sentence or two to let me know what you think. I hope my experiences will help and empower others struggling with chronic and hard-to-treat diseases and disorders.

Sometimes our greatest challenges generate opportunities we never expected.  🙂

May you all find your silver lining.

Power to the patients!