What are the side effects of cannabis on Sophie?
I have no idea whether that video will actually work, but it's of Sophie at school yesterday, smiling as she bounces on a giant ball. She smiles more and more often these days, and I am guilty of not celebrating that enough. Since she's been on Charlotte's Web, her seizures have not only been reduced dramatically, but she smiles more. The smile is a genuine one of pleasure -- even mirth -- and is not related to feeling "high," although even if she were high (impossible with Charlotte's Web), I wouldn't mind. It's funny what scares people, what throws them off, and certainly the psychoactive part of marijuana is what is causing the greatest uproar in our country. While this isn't an issue with Charlotte's Web and other high ratio cannabis strains, the fact that people are worried about someone like Sophie possibly getting a little high, frankly, cracks me up. I've been doing this a long time -- watching constant seizures, spending thousands and thousands of dollars on drugs for those seizures, drugs that I have injected into, squirted down and even forced into Sophie over two decades. I've also watched her have the most debilitating side effects that you can imagine: screaming for hours on end (called irritability on package inserts or you just have to see what your tolerance is, said the neurologist early on in our journey), agitation, constipation, constant moaning and rocking, dehydration, anorexia, sleeplessness (we probably didn't sleep more than 2-4 hours in a stretch for the first eight or so years of Sophie's life), rashes, fevers, extreme hunger, impacted stool (from the ketogenic diet), dizziness, lethargy, headaches, nausea/retching, extreme drooling, and the mother of all side effects: INCREASED SEIZURES OR NEW TYPES OF SEIZURES! However anecdotal (and Lord knows, we hate the anecdotal!), it's my firm belief that some of those twenty-two drugs we tried taught Sophie's brain to seize in different ways, sometimes in worse ways -- a sort of circumvention that her brain, ever more clever than the drugs, managed.
Other than some initial drowsiness that we noticed in the first few months of her trial of Charlotte's Web, which we realized is the result of being on a benzo, we haven't noticed any significant side effects other than positive ones, like better sleep, a heightened awareness, alertness and attempts to vocalize. While there are some reports of children and young adults trying cannabis and seeing very little change or not being able to tolerate it, from what I've read and experienced in talking to many, many people, is that our positive side effects are quite common. Sophie is smiling more often and more purposefully for the first time in well over a decade. It's easily the best side effect of medicine that we've ever experienced!
Other Cannabis Oil Questions Answered:
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"May increase ability to enjoy life."
ReplyDeleteYeah.
Let's see a label with that warning on it.
May you both go from strength to strength.
ReplyDeleteI am totally amazed by the abilities of such an ordinary plant. Amazed and absolutely delighted for Sophie. That video is so warm and full of good energy.
ReplyDeleteFor those who are having seizures and other medical issues that cannot be well addressed by what is out there, who the heck cares if getting high is a side effect? Especially given the horrendous side effects of treatments being used for many of these conditions.
ReplyDeleteThe problem is that those putting road blocks in use of this oil or other medicinal use of weed, are not looking at those who can so benefit from it, but by the possibilities of those abusing it if and when it becomes legal. Those focusing on that issue are not looking at the Sophies at all, not even on their radar. Either too few are in such a situation,though absolute numbers seem high, or they just are not being counted, something that happens a lot with those who are helpless, disabled, not making enough noise to be heard among all of the demands out there.
That is what's taking so long. I think that pot will be legalized, medicinally and for recreational use as well, but these wheels turn way to slowly for those who really need something to alleviate serious medical situations.
So hoping the benefit remains--there have been other homeopathic solutions out there, that I'm sure, you, Elizabeth have found and used for Sophie, that made some difference--probably in prior posts somewhere, that did not last and so Sophie went back to the medically sanctioned benzodiapines despite the risks and side effects as not being on them was considered even more dangerous.
I've been writing, asking for research on the use of these oils, for some medical leeway to use them before the clincial trials can get underway, to get the side effects documented over time so that those who may benefit from Cannabis do not have to wait. I am glad that Sophie has access to these oils and it outrages me that many who are in dire need for some relief are not getting access when it is possible this could make a huge difference. Not going to get many doctors to jump on board without some protection given to them, because there is a fear that something comes up with the use that harms or kills those using the stuff.
when epileptic activity, either tonic clonic, complex partial, other seizure types etc OR or sub clinical (often woefully undiagnosed or MIS -diagnosed sadly in this era as 'autism' ) is removed, the patient often resumes -or gains - how to say without seeming prejudiced? - to put it in words of my son who at age 10 had successful ltl surgery - "i feel normal again...I want to be a regular kid". he had not been able to string more than three-four words together for years prior to that morning...and often lost skills and basic bodily functions prior to surgery. aeds tried prior to surgery often resulted in frightening side effects such as galacteria...in an 8 yr old boy wow ...and screaming for hours/days. surgery is not a cure all- because post op euphoria/honeymoon may not last - aeds r necessary with all crazy side effects - but it did show me as a parent and observer that removal of epileptic activity can allow for immediate astonishing improvement - and now I hear medical marijuana therapy seems to CALM abnormal brain activity with no negative side effects. other AEDs seem to SUPRESS activity in perhaps violent (harmful)ways to brain, while cbd/thca therapy does not. In short, I am not surprised one bit that Sophie is showing her true self. and in this video, a very 'normal' slightly self conscious, lovely young intelligent person.
ReplyDeletehope this is helpful,
xoj
What Mrsl Moon said!
ReplyDeleteJesus, even if she WERE getting a little high, would that be so terrible compared to the spectrum of other side effects you described? I don't know why people are so hung up on the prospect of a little high. (And I say this as someone who hasn't used marijuana recreationally for years and years -- and yes, I know that's a totally different thing.) Besides, as you said, a high is apparently not possible with Charlotte's Web. I'm sure she just feels better, period. With such diminished seizure activity, who wouldn't?
ReplyDeletePower to the people, and by "people" I mean smiling, bouncing Sophie!
ReplyDelete~nancy
i just finished writing a letter to several of calvin's current and former physicians and neurologist saying roughly the same thing. i'll be sharing it, and yours, on my blog today. xoxooxoxox
ReplyDeleteThis is powerful testimony. Thank you for being the point of the spear. We need you.
ReplyDeleteI agree with the notion that her getting "a little high" is absurd. Not only because we know that it IS impossible with this particular medication, but also because there are so many widely accepted medications out there that DO get people high. Oxycodone, anyone? How about Xanax? Seriously. When people stop reacting out of fear and start admitting that they have fallen prey to the "war on drugs" machine, maybe we'll get somewhere. In the meantime, I'm sharing the link to these posts on my Facebook page if it's okay so that more people can hear your wise words and read about Sophie's experience with cannabis oil.
ReplyDeleteLove the video. Love the smiling. Love that it's working. Do not love the teeny, tiny font of your blog. Has it gotten smaller just recently, or have my eyes gotten that much worse?
ReplyDeleteShe looks wonderful!
ReplyDeleteThis makes me so very, very happy. I can only begin to imagine the difference this must have wrought in your lives. xoxo
ReplyDelete