mom31257 Posted March 3, 2015 Share Posted March 3, 2015 Does anyone here on the boards have experience with cannabis oil, especially for epilepsy? My nephew has severe epilepsy, and my sister is interested in finding out more about the legality of trying it. If you or a family member is using it legally, would you mind to share what all is involved? Do you have to move to a state and set up permanent residence? Can you move on a temporary basis to give it a try? If you lived in a state which decriminalizes possession, can you bring it across state lines? Any information you can share would be greatly appreciated. He has mitochondrial disorder, and it seems to be progressing quickly. She would like to give him the best quality of life he can have for as long as possible. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted March 3, 2015 Share Posted March 3, 2015 This page has answers to most of your questions. http://theroc.us/index.php?option=com_content&view=article&id=32&Itemid=199 1 Quote Link to comment Share on other sites More sharing options...
Tsuga Posted March 3, 2015 Share Posted March 3, 2015 You can NOT bring cannabis oil into a state in which it is illegal, from a state where it is legal. I mean, you can, but that's illegal. You would have to move to the state where it is legal for the time being. Where it is legal, it's usually in a high quality of life state, and around here you'd be able to get it from the medical marijuana shop. I think where it's not legal recreationally, you need a permit and you get that from an MD. Edit--Never mind, I did not realize that epilepsy is not a condition which is on the list of conditions treated by these products in my state! In any case, we live in a legal state (but apparently not for treatment of epilepsy) and it's all very transparent and nothing shady required to obtain needed medication. I wish your sister and her family the best. I know a few people who've used it* and it seems like a really great drug for those who need it. *Not for this particular condition. 1 Quote Link to comment Share on other sites More sharing options...
zimom Posted March 3, 2015 Share Posted March 3, 2015 .. 3 Quote Link to comment Share on other sites More sharing options...
J-rap Posted March 3, 2015 Share Posted March 3, 2015 As others have stated, cannabis oil must be used within states in which it is legal, following their own specific guidelines. For example, in some states, only certain health conditions qualify, and only by residents of that state. (Some states allow residents of other states to use it.) My daughter has severe chronic migraines (as in, not one day without one for five years), which may be related to epilepsy. Epilepsy runs in both of our families. Originally, she tried hemp oil, which is legal. She was able to order it my mail, a very pure form which supposedly can sometimes do what cannabis does, medically. You could look into that as a start. Hemp oil did not help my daughter, so she moved to California last year where she is now being treated. So far, she hasn't found a strain or form that helps with the actual pain of her headache, but it does seem to take away other symptoms, such as tightness in her neck and shoulders. It also has greatly helped with her carpel tunnel pain. I hope your nephew can find something that helps him, and I hope that medical cannabis becomes available everywhere for those whose health it could benefit. 2 Quote Link to comment Share on other sites More sharing options...
Southern Ivy Posted March 3, 2015 Share Posted March 3, 2015 I do not have a child, but have some friends who need the medical marijuana for epilepsy. Friend 1: Still lives in Arkansas. Is as straight-laced as they come. Husband is a deacon, father is the pastor of their church, etc. But, she is all for medical marijuana (within certain parameters). Will be voting for the legalization of medical marijuana when it ever gets to the Arkansas ballot. For now, her son is still trying to find medications that work for him. It's a long and scary road for them. Their business is in Arkansas or I think they'd be very quick to move to Colorado. Friend 2: Most to Colorado for their daughter once they legalized marijuana. Things seem to be going fairly well. 2 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted March 3, 2015 Share Posted March 3, 2015 I was following a family's story ( the WIlson's) for awhile about a little girl with Dravet Syndrome ( a severe form of epilepsy). They results they had with using it was night and day. They were from NJ and moved to CO where they had better access to it. The father seems very open to answering questions so if your sister might want to see if she can find an email for him. 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted March 3, 2015 Share Posted March 3, 2015 I have a friend who moved to Colorado so that their child could use the oil for his severe epilepsy. The child can now army crawl, follow his parents around the room with his eyes, and has progressed in a positive manner in other ways. 6 Quote Link to comment Share on other sites More sharing options...
MomtoCandJ Posted March 3, 2015 Share Posted March 3, 2015 Can't believe that cannabis is a schedule 1 but cocaine is schedule 2, something is very messed up with that. I wish the Federal government would drop it to a schedule 2 so that the proper studies can be done and so that people wouldn't need to worry about having it in their possession. 6 Quote Link to comment Share on other sites More sharing options...
bettyandbob Posted March 3, 2015 Share Posted March 3, 2015 Given the side effects of the substance, especially on children, I would seek other interventions before cannabis oil, myself. It could very well cause more problems for him than it solves, but that is really something that would have to be assessed on a case by case basis by a doctor and family. In some cases the oil or even aerosol/nebulized marijuana might be the best choice, but I can't say I've seen too many cases where that's reality. Preferred? Sure. But not actually the *best* or *safest* option, especially for a child for whom the deleterious side effects pile up faster and in greater quantity. That balance could well be tipped depending on the mitochondrial disorder, though, which is why a doctor should really help her assess it. Maybe a consultation from a specialist in a state where it is legal, to explore whether it would be worth trying to obtain it for them or if the returns aren't worth the effort compared to other treatments? Not saying anything else on this one, but I'm sorry you're having to confront this due to medical issues :( I doubt anyone considering this for their child is taking it lightly. The people I've heard about have exhausted every treatment available. Colorado is attracting some families with very ill children who are out of options. Having half your family split between states or leaving everything and uprooting the whole family to get access is not something done without thinking. 7 Quote Link to comment Share on other sites More sharing options...
LostSurprise Posted March 3, 2015 Share Posted March 3, 2015 Cannabis oil for epilepsy is not the same thing as using regular cannabis medically for pain. The plant used for epilepsy has been modified to exclude most of the THC factor which makes it a recreational drug (more like plants bred for hemp which also have a very very low THC). So far I haven't seen or heard any negatives (although it hasn't worked for everyone). I don't have any direct experience. Our son has a severe, medication-resistant epilepsy, so I hear a lot from online friends and acquaintances. Several of them moved to Colorado a few years ago specifically for this reason. They didn't have any difficulties setting up residency and gaining access, but they did make a permanent move. Our state has legalized the use of cannabis for this purpose recently, but since the growing and preparation of it is still illegal...and it is illegal to cross state lines with it...it's of little use to patients here. Everyone I know, even the most conservative, is in favor of this particular use. The laws and infrastructure just need to catch up. 2 Quote Link to comment Share on other sites More sharing options...
Jasperstone Posted March 4, 2015 Share Posted March 4, 2015 As others have stated, cannabis oil must be used within states in which it is legal, following their own specific guidelines. For example, in some states, only certain health conditions qualify, and only by residents of that state. (Some states allow residents of other states to use it.) My daughter has severe chronic migraines (as in, not one day without one for five years), which may be related to epilepsy. Epilepsy runs in both of our families. Originally, she tried hemp oil, which is legal. She was able to order it my mail, a very pure form which supposedly can sometimes do what cannabis does, medically. You could look into that as a start. Hemp oil did not help my daughter, so she moved to California last year where she is now being treated. So far, she hasn't found a strain or form that helps with the actual pain of her headache, but it does seem to take away other symptoms, such as tightness in her neck and shoulders. It also has greatly helped with her carpel tunnel pain. I hope your nephew can find something that helps him, and I hope that medical cannabis becomes available everywhere for those whose health it could benefit. Get this- in Oz you can purchase hemp oil, but it has a huge warning on the label that it's illegal to digest it!!!! 1 Quote Link to comment Share on other sites More sharing options...
mom31257 Posted March 4, 2015 Author Share Posted March 4, 2015 Thank you for the advice and support! My sister's husband died 2 months ago, so the thought of moving is really hard right now. Quote Link to comment Share on other sites More sharing options...
LMV Posted March 4, 2015 Share Posted March 4, 2015 Can't believe that cannabis is a schedule 1 but cocaine is schedule 2, something is very messed up with that. I wish the Federal government would drop it to a schedule 2 so that the proper studies can be done and so that people wouldn't need to worry about having it in their possession. DEA Schedule 1 drugs are schedule 1 because they do not have any accepted medical use. Physicians cannot legally prescribe these. Because cocaine has significant vasoconstrictive (and anesthetic) properties there are still some uses for it in specific ENT situations which puts it into Schedule 2. Although Marijuana itself remains schedule 1, several synthetic cannabinoids which are schedule 2 (Nabilone aka Cesamet) and schedule 3 (Dronabinol aka Marinol) do exist and can be legally prescribed in the US. Quote Link to comment Share on other sites More sharing options...
Tsuga Posted March 4, 2015 Share Posted March 4, 2015 So sorry to hear your sister is going through all this. That sounds really rough. I do not think it is wise to use illegal medications but I hope she gets the help she needs. I wish the FDA had more funding to do the research on this and many other life-saving drugs. So many people are waiting... :( Quote Link to comment Share on other sites More sharing options...
mom31257 Posted March 5, 2015 Author Share Posted March 5, 2015 Given the side effects of the substance, especially on children, I would seek other interventions before cannabis oil, myself. It could very well cause more problems for him than it solves, but that is really something that would have to be assessed on a case by case basis by a doctor and family. In some cases the oil or even aerosol/nebulized marijuana might be the best choice, but I can't say I've seen too many cases where that's reality. Preferred? Sure. But not actually the *best* or *safest* option, especially for a child for whom the deleterious side effects pile up faster and in greater quantity. That balance could well be tipped depending on the mitochondrial disorder, though, which is why a doctor should really help her assess it. Maybe a consultation from a specialist in a state where it is legal, to explore whether it would be worth trying to obtain it for them or if the returns aren't worth the effort compared to other treatments? Not saying anything else on this one, but I'm sorry you're having to confront this due to medical issues :( He is actually an adult. They have tried about all the seizures meds on the market, some of which had very adverse reactions in him. A consult from someone in the state is a great idea! Quote Link to comment Share on other sites More sharing options...
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