It was fun for a bit, but I'm not sure what happened for another bit because Sophie had a bunch of seizures. Was it the THCa? Was it the last dregs in the bottle of CBD? Too much THC, perhaps? The seizures kept coming, unusually. They were very small -- which is also unusual, but constant. I didn't feel worried, though, which is unusual. We're skipping a dose of the CBD and perhaps stopping the THCa. Big sighs all around for a day that's done. Tomorrow is another day, as they say.
Well, it was fun for a bit, as you said -- that counts for a lot!
ReplyDeleteYou are a scientist. A Mother-Scientist.
ReplyDeleteYou are also a goddess.
And Sophie is yes, a mermaid.
It's a difficult thing you are doing, having to guess the portions, amounts, sequencing and everything in using any of these products as they have not gone through the years of testing to get maximum average doses and side effects. So it is for the pioneers. The way it works it will take a lot of time and a someone offering up a huge financial incentive to get that kind of results, and until then, it takes people like you to "hunt and peck" to come up with enough anecdotal improvements for those who are in the same situation to follow suit. I cannot imagine how I'd even begin to wean off of a heavy duty drug protocol and add on something new, groping in the dark as I do this, guessing on the dose,timing, working with the side effects without a road map. It was difficult enough with a roadmap that I did have to follow with 17 different meds, all with the most terrible possible side effects, long and short term. for two years. But I had an end in sight and there were plans for the side effects should they happen. How long do you expect it will be before standard medicine, will be able to incorporate CBD, THC and other marijuana derivatives into epilepsy protocols? Epilepsy is so individual--we know a number of people, (as children years ago, now adults) who could not get seizure control. The three that finally got there took three different routes--one surgery, one the keto diet and the other a combo of drugs including benzos. What worked for some, simply did not work for others. Our friend who is and has been on a heavy benzo regiment is a Johns Hopkins University graduate who works in a federal job. Yes, the drugs are a terrible load on him, and his health is not good, but it allows him to function the best in a self supporting world. He says right out that his life span is most certainly shortened by these drugs.
ReplyDeleteWhat you and others are doing in embarking on this journey of the unknown may help many after you. The protocols take so long to run through clinical trials and to go through all of the variations. In those many years of those efforts, so many children died of a disease that is now often curable in children using the very same agents that had to be calibrated into timing and dosages, My son was a beneficiary of those many trials, and a neighbor's son was one of the soldiers who died using the very same drugs, nearly identically, but not the way they are used now in ALL.
Why some quick stop gap measures to provide even some relief to those who can get it from marijuana is not being set forth with strong caveats and disclaimers, I don't know. The devils they do know are in the medical arena, and until those that are not "vetted" are admitted, they are not out there for all to try though they may not be anywhere nearly as dastardly as those being used in the fight. So it is with the benzo products and pot products right now.
Jami Young -- Wow! That's quite a comment, and I thank you for your support and kind words. Everything you say is true. Since you apparently are a new reader here, I'll add that Sophie has been on 22 different drugs in various combinations for her epilepsy and the keto diet twice, yet she had never had a seizure-free day in nineteen years until we tried Charlotte's Web. She is not a candidate for surgery. And while I do hope that the powers that be will get with the program and put some "stop gap measures" into place soon, I am comforted by the fact that this plant was used for many thousands of years, that it's legal to grow and that we can ultimately make the oil ourselves should we need to!
DeleteArghhh, the guesswork. I will surround you both in love and light and hope that today is a seizure-free day.
ReplyDeleteOn another note, the photo of you both is so stunning - you have the same shiny curls that shimmer in the sun. Such a delight to see!
Sending love and hopes for a better day tomorrow, which is, I guess, today...
ReplyDeleteHugs to you both. I wish there was certain knowledge, a certain path. I'm sorry there is not. Thanks for the beautiful photos.
ReplyDeleteIt's all that living with the mysteries that I think has made you so wise. But it's got to be so frustrating, too. You both look like mermaids here to me.
ReplyDeleteI'm not a new reader. I 've read all of your blog. I hold my breath each day in seeing whether Sophie has gotten another seizure free day or not, and am so hopeful that this works for her. Even if it does not, that these extracts can give some relief, even if only temporarily is something that needs to brought into the pipeline, where it's still just a trickle. There are a lot of people whose lives can be made a lot better with anything to alleviate the seizure frequency and severity.
ReplyDeleteThank you, again -- for all your words and support.
DeleteHumbled. Such a journey this is. Sending love.
ReplyDelete