tag:blogger.com,1999:blog-4863417462909147257.post7863397527667602819..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: I'm not a doctor, but.Elizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-4863417462909147257.post-16950514996287751282014-09-12T11:31:20.933-07:002014-09-12T11:31:20.933-07:00I just found your blog and I am loving it. My dau...I just found your blog and I am loving it. My daughter was recently diagnosed with Dravet Syndrome. Glad I found you! Lindsay Rosehttps://www.blogger.com/profile/08599692945025100322noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36237506756078167792014-09-12T08:03:25.348-07:002014-09-12T08:03:25.348-07:00I suspect that Cath Young is onto something when s...I suspect that Cath Young is onto something when she says that legal considerations stymie doctors who might otherwise have the courage to go out on a limb and try CBD.<br /><br />But, that being said -- clusterfuck. Yes.<br /><br />Your weapons are powerful! You wield them beautifully!Steve Reedhttps://www.blogger.com/profile/11684120060438252945noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-57430774824807727942014-09-11T12:23:47.889-07:002014-09-11T12:23:47.889-07:00There are days when I thank my lucky stars that at...There are days when I thank my lucky stars that at the last minute, I listened to my gut and didn't go to medical school. And then there are days when I wish I had, if only to see whether the strong indoctrination of young, malleable minds into the world of power and the notion that a patient is simply a lump of clay and not a living, breathing human is possible to combat. I suspect that some of the commenters who have said that the physicians are likely scared to approve things like CBD because they could be sued are correct. I also suspect that many doctors have to be so convinced of their own superior intelligence to stomach treating their patients every day that it is hard to admit when they don't know something. But most importantly, I suspect that it is the words and love of patient advocates like you that will eventually be the tipping point that turns the tide for so many others. It is all we have and we will use those tools until it makes a difference. Love.kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-47208198880405286962014-09-11T09:58:42.088-07:002014-09-11T09:58:42.088-07:00Brain on Fire. Bran on Fire doesn't sound too ...Brain on Fire. Bran on Fire doesn't sound too easy to digest. Vesuvius At Homehttps://www.blogger.com/profile/02783271096885148080noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-22998740986278834922014-09-11T09:58:03.117-07:002014-09-11T09:58:03.117-07:00I remember reading Bran on Fire and becoming aware...I remember reading Bran on Fire and becoming aware of how often a person's life can depend upon the open-mindedness of the doctor, his or her willingness to accept new things. I wish this battle didn't have to be fought, but the world is luckier to have you as an advocate. Your inner fire is so strong. Vesuvius At Homehttps://www.blogger.com/profile/02783271096885148080noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-60966963542631062402014-09-11T09:57:30.438-07:002014-09-11T09:57:30.438-07:00Oh where to begin with this medical establishment ...Oh where to begin with this medical establishment hubris and arrogance. Thank god for you, Elizabeth, for you and other parents like you who are taking a stand. And I agree with A above - why not name names so that parents have the choice to avoid these people? Some might feel they are doing the right thing, but my bet is they're just mostly scared, and fear should not be running this debate. There's too much at stake.Andreahttps://www.blogger.com/profile/07247877396600721769noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-50164553584585659132014-09-11T08:14:03.799-07:002014-09-11T08:14:03.799-07:00I LOVE your weapons. They are powerful and will ma...I LOVE your weapons. They are powerful and will make a difference Elizabeth. I feel fortunate that our epileptologist is in our corner on this CBD journey. I also feel enormous guilt as a nurse that in my fervent desire to stop the freakin seizures I gave my son Klonopin, Ativan and now ONFI. But I also recognize I can't go back. We must go forward--- all of us. Together. If a doctor can't/ won't support that--- CHANGE! MaryLou Connollyhttps://www.blogger.com/profile/10487084753413140281noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-79332551029336194322014-09-10T18:27:06.504-07:002014-09-10T18:27:06.504-07:00I think what put me over the edge on this issue wa...I think what put me over the edge on this issue was that nytimes editorial. You know the one I mean as you commented on it as did I. I thought that editorial bordered somewhere between ludicrous and evil and Sophie kept going through my mind the whole time I was reading it. <br /><br />Your Anonymous commenter. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-45758320949644255882014-09-10T17:36:30.155-07:002014-09-10T17:36:30.155-07:00I think it would be useful for those docs to be ca...I think it would be useful for those docs to be called out by name. If they stand by their decisions, fine,<br />but other parents should be able to know in advance who they're dealing with. Ahttps://www.blogger.com/profile/06318174928862120631noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-18860440988196537182014-09-10T16:35:34.053-07:002014-09-10T16:35:34.053-07:00Clusterfuck is about the best description for it. ...Clusterfuck is about the best description for it. My girl is in this exact situation, 4 different meds, 2 types of benzos, and a horrified expression from her neurologist when we asked about cannabis oil. It's basically insane. :(Selenehttps://www.blogger.com/profile/16906565055142387639noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-77355963732259626402014-09-10T15:24:31.528-07:002014-09-10T15:24:31.528-07:00Horrible. The stats about how many people are kill...Horrible. The stats about how many people are killed a year by prescribed medication are awful - and yet, for so many people, it's the only answer, damage be damned. <br /><br />I'm so sorry for how bad it's been - it's an awful choice to have to make, and lack of confidence in doctors makes it all the more painful. Money, though... it's all about money. No one is going to be able to convince me otherwise. <br /><br />As always, I'll make this suggestion under the proviso that it's just a suggestion - but if you have any tolerance of the idea of homeopathy, you can detox things like drugs with it. Johttps://www.blogger.com/profile/08988685736635515808noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-8449427812598500772014-09-10T14:53:02.575-07:002014-09-10T14:53:02.575-07:00If there is anything more powerful than love and l...If there is anything more powerful than love and language, I do not know what it is.<br />Which makes you incredibly powerful. Ms. Moonhttps://www.blogger.com/profile/09776404747858099919noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-80778905606074882632014-09-10T14:36:49.681-07:002014-09-10T14:36:49.681-07:00I am sorry and appalled that doctors are actually ...I am sorry and appalled that doctors are actually being obstructive about patients who are not getting sufficient relief from any medical protocol and want to try something else that appears promising. I do not blame them for not assisting in this regard, because of the consequences that are likely to occur if something dire happens and a doctor is involved in the use of something like weed that has not gone through the protocols that allow the medical profession to use the substance. People sue at the drop of a hat. So those with so much at stake if something does go wrong are not going to want to risk their livelihoods, their professions, their vocations until marijuana goes through the standard testing and is proclaimed something that can be prescribed with warnings as the benzodiazepines can be used, as dangerous as they are. Attorneys should be drawing up releases that can hold up in court and protect those doctors who want to suggest, facilitate, advocate the use of substances before they are cleared. That's nearly as important as getting marijuana legalized and the extracts produced to be made available to those who can get relief from this. This situation has been around for a long time where some things just cannot be recommended by doctors when it is known that in some cases, it can be useful. The problem with marijuana is that it is still illegal in most places, and no doctor wants to make the headlines as the one who sent a patient to use it, let alone have complications and problems after use. <br /><br />I hope that this provides long term relief for all that are having seizures and other conditions that have been showing abatement. It is mind boggling that it is taking so long for the medicinal effect to be recognized and for the law to permit them to be used. This has been known for many years and just not acted upon. Anonymoushttps://www.blogger.com/profile/07636670946994161261noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-18517485535962830322014-09-10T13:47:37.336-07:002014-09-10T13:47:37.336-07:00The combined weapons of language and love have cha...The combined weapons of language and love have changed human life for a long time. You are in a proud tradition. If I can ever do something to help, write someone, sign a petition, let me know.Maggie Mayhttps://www.blogger.com/profile/14699674732274478502noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-3881473541215276462014-09-10T12:41:11.100-07:002014-09-10T12:41:11.100-07:00I don't get it either. Our neurologist poo-poo...I don't get it either. Our neurologist poo-pooed the whole marijuana thing as "hype" and made "I knew a lot of guys on pot in college!" joke. That being said, 5mg of Clobozam (which is a benzo) that we recently added to her Valproic Acid regimen has basically stopped her daily seizures...so...yeah. Once I move the the US, I'm going for the medical marijuana ASAP, regardless.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-32148129866395718072014-09-10T12:27:25.010-07:002014-09-10T12:27:25.010-07:00This is powerful stuff, Elizabeth. And it belongs ...This is powerful stuff, Elizabeth. And it belongs in your book. Thank God for your weapons and your skill and passion in using them!37paddingtonhttps://www.blogger.com/profile/12400464105403622384noreply@blogger.com