First, Do No What?

>> Sunday, June 28, 2015

I was cc'd on an email thread today and felt the need to respond. Only because I believe the spin on this issue needs to stop, and stop NOW before it gets embarrassing.

The email had this statement highlighted in it:

The families and children coming to Colorado are receiving unregulated, highly variable artisanal preparations of cannabis oil prescribed, in most cases, by physicians with no training in pediatrics, neurology, or epilepsy. As a result, the epilepsy specialists in Colorado have been at the bedside of children having severe dystonic reactions and other movement disorders, developmental regression, intractable vomiting, and worsening seizures that can be so severe they have to put the child into a coma to get the seizures to stop. Because these products are unregulated, it is impossible to know if these dangerous adverse reactions are due to the CBD or because of contaminants found in these artisanal preparations. The Colorado team has also seen families who have gone into significant debt, paying hundreds of dollars a month for oils that do not appear to work for the vast majority. For all these reasons not a single pediatric neurologist in Colorado recommends the use of artisanal cannabis preparations. Possibly of most concern is that some families are now opting out of proven treatments, such as surgery or the ketogenic diet, or newer antiseizure medications because they have put all their hope in CBD oils.

Hmmm..... only a couple of things about this that are complete crap, the rest is just fluffy BS. I edited myself, add the colorful vernacular yourself.

So let me rewrite the headline from:

American Epilepsy Society President Says Side Effects of Artisanal CBD Oils Can Be So Severe No Pediatric Neurologist in Colorado Will Recommend Them 
In a desperate attempt to stay relevant, President of Epilepsy Specialists Group criticizes patient reports and alludes to parent nullification, forcing parents to decide between Doctors and their need for better treatment options.
Parents want to try this, they already know that the mainstream medications are causing as many, if not more of the side effects they say they are seeing now. Bug had to be put in a near-coma three times to stop his seizures. And he wasn't on cannabis. OH MY HOLY HELL...what does THAT mean? What caused that?  Refractory epilepsy. Duh.

The idea that Doctors sit by their patients bed while they are in status...that made me laugh out loud, especially when they are puking, just ha! I love Bug's Doctors but none of the them held his hand while his heartrate was in the 30's. Glenn laid on the couch in his room, checking on him every few minutes and I sat, arm on the bed, hand in hand with my boy while I thought he was going to die. If there was a Doctor sitting beside him, I would know. And if she thinks we will believe the nobel, caring Doctor line, well...that's just cute. Paints a good picture though. Nice try.

I am rendered speechless at the thought that because a medication is FDA approved that means it's perfect and safe and a better choice than mother nature's kitchen. I can show page after page after page of both dangerous side effects and death's created by medications. Medications designed to help, that ended up causing dire results. Some, the luck of the draw because individuals are different and respond in different ways and others, tainted during the manufacturing process. Old, tired argument, get a new one so I don't have to scare people and YOU don't create more fear about cannabis AND FDA approved medications. Take another tactic, this one is a yawner and shows how out of touch you really are.

What I want to see are the numbers. The really real numbers. I want to hear from ALL of the Doctors that refuse to treat patients on cannabis. I want to hear them say why and then I want to ask them if they say this out of fear from federal repercussions, or from investments made by pharmaceutical companies. I want to know how many of these children with the reactions were patients BEFORE they saw them in hospital in status. Because if this is a new patient, there is NO way to know if the cannabis was the catalyst or not. What is being quoted here is...wait for it...anecdotal. Why is that, you may ask, she's a Doctor, doesn't that mean there is a scientific basis for it? Nope, not at all and here's why:  because it was NOT in a controlled environment. See how that works?

If you can not control all of the variables, then you are left with opinion, not science.  Or you have to admit that what you have is as good as what parents are giving you.

And I want to hear from their patients. I want to hear how they feel about their Doctors refusal to treat and if it is stopping them from trying the artisan oils. The parents I know, when faced with a Doctor that says no, find another. THEY FIRE THEIR DOCTOR.

In one such case, the parents were told by their then-current Pediatric Neurologist their paperwork was lost, then they sent the paperwork in, then they had no idea if the nurse sent it in. So, after months of cat and mouse, the parents took their daughter to a new Pediatric Neurologist who agreed that their child was severe enough to try the oil and signed the recommendation. 

From the first dose, the child has been seizure free.

Months later, their child finally got access, their child is more active, has not been in status ONCE, which is better than once a month (documented), is learning to speak with technical assistance and even making some noises. Is laughing.

When I met this child and the parents years ago, there was little movement, little eye contact, almost no smiles. When smiles happened, pictures happened. Once or twice every few months.  Last week, Mom posted a video of the child giggling. Something I had never heard.

So, Doctor, who is doing no harm (remember that part of the oath you took) I DARE you to call Mom and tell her she can't have the CBD Oil. I DARE YOU. Let's book the Oprah Show and get the two of you on it. Doctor, who is trying to kill all hope for all families because she is overwhelmed by the response and can't keep up (OR owes someone something for being vocal about the evil and dirty CBD) versus Mom who met her child for the first time. OR better yet, Doctor naysayer versus a smiling child.

If you are so concerned about the quality and the dosing, become a part of setting the guidelines for it.  Lend your voice to getting it FDA approved, or at least TESTED, and then help establish the dosing protocol. Because, good Doctor, you are behind the curve, you will not get in front of this steam roller, you will not persuade desperate parents watching their children suffer to NOT try CBD with or without THC, you will NOT, they have given you your chance and feel hopeless. And now, they feel betrayed.

If you were Bug's Doctor, you wouldn't be for long. He is your patient, and if you are not committed to trying to help him, then I will find someone who will. I will find someone as dedicated to helping him as we are.

If any of you that read this have a story to tell about your Doctor in Colorado denying access to, or help in getting, CBD as a treatment, please, feel free to share this post and tell your story, or post it in the comments. I would LOVE to hear this. Good or bad, I can take it, and the world needs to hear it. No, your DOCTORS need to hear it.


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