Is Sophie still taking the same amount of Charlotte's Web, and how much does she take? Is it working? Is it a miracle? Do you think marijuana should be legalized?
I think I mentioned a while back that I don't like calling any treatment that's been around for thousands of years and whose efficacy was basically hidden from the public because of politics a miracle. A miracle is defined as a surprising and welcome event that is not explicable by natural or scientific laws and is therefore considered to be the work of a divine agency. I guess you could say that a miracle is also a wonder or a marvel, but when people start ascribing it to the supernatural or say that God gave us the plant -- well -- forgive my squirminess. I'm not a believer in that way. I just don't buy that God made the plant available to Sophie and not to someone like her in -- let's say -- Georgia, because She wanted a bunch of politicians to be arguing over who gets it and who doesn't and then somehow see the light and further glorify Her name by agreeing it might be helpful to some kids but only some kids and not all kids and certainly not with any of that funny stuff in it. Yesterday, I heard the mother of the American Sniper wailing on the radio and praising God for meting out justice to the sick soul of the soldier that shot her son to death by giving him a sentence of life without parole. At risk of sounding heretical or even offending someone, I wondered from the safety of my sexy Mazda where I was listening to this woman praise her God, if God had approved of her son killing those 166 people over in that evidently godforsaken country and then thought better of it and placed her son in the path of the other soldier who righted that wrong and then determined that he'd need to go to jail for a while and think about that and --- where was I?
The miracle. The answer to the question.
Sophie is now taking less Charlotte's Web Hemp Oil (CWHO) than she was last year, a tiny amount, really, and is on close to 50% less benzo than she had been when we began weaning in June of last year. The ratio of cannabis to THC in CWHO is approximately 26:1, and we have found that the coconut oil base is easier on her stomach. It appears that for many people taking cannabis, a smaller amount is better. So unAmerican, right? We have not added any THCa, or THC, something that many of the kids with epilepsy are taking to help seizure control (and something that God has determined should not be available in many states because of its psychoactive properties), but at least for the moment have tweaked the dosage to about the right point and are happy with the results. We believe the lower amount of benzo is allowing the cannabis to do its work and hope that as we continue to wean the drug --- slowly, slowly, slowly -- she'll continue to do better and better. This is touchy stuff, folks, and it's difficult to figure out. I know of many people whose kids are doing very well with cannabis, and I know some people whose kids are not doing so well or who have even seen a worsening of their symptoms. I think the combination of multiple anti-epileptic drugs and the exquisitely unique brain chemistry of each person make determining whether cannabis will or can help to control seizures very complex, but I believe fervently that every person should have the opportunity to try it and tinker with it. I also believe in legalizing marijuana in all forms and rescheduling it. Pronto.
Sophie is good. She's really good!
She's good right now, and that's a marvel and a wonder for which I'm very, very grateful. The universe is abundant.
Thank you for the update; happy to hear she is doing so well!
ReplyDeleteThanks for your comment, Sheila!
DeleteThis is what I love about you so much- you are not black nor white. You jump right into the shades of gray and red and yellow and blue and green and all the rest and consider each carefully. You study, you take note, you observe, you are brave.
ReplyDeleteNo wonder you are becoming the go-to woman for these questions. You ASK them. You are not afraid to give the true answers.
I do love you, Elizabeth. I hope you know that.
I do know that, and the feeling is mutual.
DeleteWhat Sister Moon said.
DeleteI am so very glad for you and your family for how much CWHO has helped Sophie! There are some tiny inklings that the opportunity to use CBD oil may come to the great state of Pennsylvania before too much longer (thank goodness for our new governor!). For a number of reasons I am not sure if CBD will end up being our "answer," but I would truly welcome the chance to find that out for ourselves. The politics around this is completely insane, and harming so many children and families.
ReplyDeleteKira Gartner -- I think about you and your girl all the time and wish some ease for you both.
DeleteI'm incredibly happy to hear this.
ReplyDeleteTheresa -- I always love to see your name here -- we've known one another for so long, right? And our children are growing up, and it's so nice to see.
DeleteHooray for Sophie! That's an adorable picture of her. And I love her room.
ReplyDeleteThanks, Denise. We all love Sophie's room!
DeleteThanks, Denise. We all love Sophie's room!
DeleteYou speak so many of my thoughts---- so eloquently though. I am so happy Sophie's good.
ReplyDeleteMary Lou -- thank you. And you speak so eloquently yourself of your son's struggles!
DeleteI just want to use this opportunity to thank Dr Mukesh for the Cannabis oil supplied to my mother.
ReplyDeleteMy Mother was Cured of cancer with the use of Cannabis oil, and now my mother is alive and healthy without cancer..
A very big thank you Dr Mukesh for your good work.
get your Cannabis Medication now and start healing yourself, contact Dr.Mukesh once more Doctormukeshcannabisoil@gmx.com
Thanks to you Dr.Mukesh for all the help that was rendered to my mother
Amelia,
Australia.
Amelia -- Cannabis has some awesome applications, and we're only one re-discovering them. I'm glad to hear your mother is healed.
DeleteI just don't understand monotheistic religious people. I guess I'm going to hell.
ReplyDeleteI do understand that Charlotte's Web has benefitted Sophie greatly, though (and hallelujah for that!) and I also agree that marijuana should be 100 percent legal in all its forms.
Thanks, Steve! And I'll probably see you in hell!
DeleteAmen!
DeleteI can’t help but believe that any God who is worth believing in wants all of us to be whole and healthy, loved and cared for. Keep asking questions, Elizabeth. We are all making our way through the fog.
ReplyDeleteThanks, kathryntjones!
DeleteI love your writing. I love how you think, share, explain--all of it. You make me a better physician, I just ant you to know that. I am learning and listening and sharing, Elizabeth. You are a teacher.
ReplyDeleteI'm so glad Sophie is good. I thought of you today also because in your hometown we are on the second of our "fake snow days" and my kids are home. I said to Harry, "My friend Elizabeth home schools and I don't know how she does it." By the way, even though you don't believe in that way, I also told him that everyone who home schools is going to heaven without any questions at the pearly gates. Ha ha ha. . .
Grady Doctor -- thanks for your kind words. Remember that I started homeschooling when Oliver was in seventh grade! I'm not sure I could have done it when he was younger!
DeleteI will never stop getting teary-eyed when I think about how Sophie has improved. It just slays me with happiness. For her. For your family. For the change her story and others' stories can bring about.
ReplyDeleteJill -- Thank you!
DeleteCan I just say that I love the way you answer a question? My kids are always rolling their eyes at me because when they ask me a 'simple' question, I do just what you did in the first paragraph - give the background, parse the words, find my passion. Then, and only then do I answer the question and, while they complain about it, I think they also listen despite themselves. Your perspective is so important because it isn't sound bites - it's real, honest, experiential information. I am so glad that Sophie is doing well and I can't wait for the day when she is finally off the benzos. I think I shall send you another box of Parisian chocolates to celebrate that when it happens ;-). Love.
ReplyDeletekario -- I think I owe you a box of chocolates for all the wonderful advice you've given and shared --
DeleteMaybe what we ought to do is plan to sit together and share a box ;-). In person. That would be lovely.
DeleteElizabeth I am a long time reader of your blog. Have never posted before but have come out of closet on Mary Moon's blog and on FB. I love the way you approach this as others have said. As a long time member of the Legalise Cannabis school of thought (since the 60s) I seethe at the ludicrous opinions put forward as facts. I feel the same as Stevereed (as he is now known) about the whole religious pronunciations on the matter and might be going to hell with him. Maggi x
ReplyDeleteMaggi -- Thanks for coming out of the closet and leaving such kind words. I am glad that you're a member of the Legalize Cannabis school of thought and have been for so long.
DeleteSituation is ludicrous Amount of money spent on trying and failing to police it because it is criminal would be better spent on other things Growing of much stronger hybrid plants that can be problematic to people emerged out of illegality. People with sick partners children etc going to drug dealers to try to relieve suffering when nothing else works. Nothing removed like in the oil you get for Sophie. OK for some folks not others. People who had never smoked in theirblives smoking with all its dangers. Learning to make hash cakes to avoid smoking became like the Great British Bake Off! All govt etc had to do was look at the facts about the medicinal usefulness, they have been out there a long time. Our ridiculous govt Britain that is spent money on a study of it all. Experts in the field concluded that cannabis should be legalised and research should start on medicinal use. Govt didn't like result so ignored it! Right l am sorry have lapsed into a rant. I read blogs for years and say nowt and then…..Hope sanity prevails in the end. Maggi x
DeleteElizabeth, even though I know you probably wish you didn't have to be, you are a thought leader in this, and thank God for you. I am so glad Sophie is doing well.
ReplyDelete37paddington -- Thank you. I am giggling a bit, though, to be thought of as a Thought Leader. It sounds sort of North Korean. Ha!
DeleteYes, I agree with That and That and OMG That and that and that and that and anything else that I missed, because we are always in agreement, always.. Everyone else has said all the rest and so eloquently and I agree with all of them as well.
ReplyDeleteI guess that makes us all your sisters and brothers ... I'm also thinking of all those who read you silently or just don't have time or energy to comment but are united in their gratitude for you Elizabeth and all you do and share. Sophiegirl looks fantastic today. Just try to imagine how all you do in that room to make things bright and cheerful for her must effect her. It makes a difference I am sure, whether she can communicate that or not, I am sure she finds solace and joy there.
liv- We do have some kind of amazing community here, don't we. I'm glad that you're a part of it.
DeleteIt's great to hear that Sophie is doing well. I'm particularly encouraged by the contribution you believe was made by lowering her benzodiazepam. We haven't touched that yet. Our neurologist wants C. to reach the maximum cannabis dose first and only then to tackle the benzo (she's on Rivotril drops).
ReplyDeleteI'm hoping so, so intensely that we'll see further progress then. I don't even entertain the possibility that we're among those you mentioned who weren't saved by cannabis.
Thanks for your continued updates and those stunning photos of Sophie in her cool outfits.
The Sound of the Silent -- Thanks for your encouragement. I'm concerned that your neurologist wants to push the cannabis UP and not down. I am hearing, more and more, that the LOWER the dose of CBD, the better the outcome and that some kids have started small, gone up and then backed down (our experience) having a more beneficial effect. Also, kids on benzos do much better overall when they are off of them. Overall, I think the tinkering is what's important, and even though aggravating at times, it's worth it!
Delete