Huckleberry Posted June 11, 2017 Report Share Posted June 11, 2017 Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long. Its working for so many people :) Quote Link to comment Share on other sites More sharing options...
Eleven Posted June 12, 2017 Report Share Posted June 12, 2017 Swamp, Im glad this is working for you guys. It is ridiculous that stuff like this was underground for so long. You have no idea.... It should be completely legal for medical reasons. I can't/don't enjoy it recreationally and haven't for a very long time, but grass has medicinal properties that are just unsurpassable. Quote Link to comment Share on other sites More sharing options...
Brawndo Posted June 12, 2017 Report Share Posted June 12, 2017 You have no idea.... It should be completely legal for medical reasons. I can't/don't enjoy it recreationally and haven't for a very long time, but grass has medicinal properties that are just unsurpassable. I could not agree more that it should be legal for medical reasons, its use for seizure treatment particularly in pediatric cases is well documented and I believe it's a superior choice for treatment of chronic pain then opioids. Hell legalizing it small amounts for recreational use is not a bad idea. This coming for someone from someone who is a complete geek and never tried it. Swamp, I'm ecstatic to hear about the early results witn your daughter. There are a few clinical trials going on in Israel regarding the use of canniboids for treatment for of behaviors with autism, hopefully the results open the door for greater use here. I'll admit I'm watching closely myself. My oldest is Autistic and does hit his head with either his hand or an object when worked up. Unfortunately we have had to replace five IPads, despite Otterboxes. We use Atarax as needed but unfortunately it's usually too late to stop a breakdown. His pediatrician has offered risperdal, but that is an atypical antipsychotic and the long term effects are unknown. Please keep us up to date how your daughter responds. Also no one should have to drive two hours for medication for their child Quote Link to comment Share on other sites More sharing options...
Randall Flagg Posted June 12, 2017 Report Share Posted June 12, 2017 Freakin fantastic. Quote Link to comment Share on other sites More sharing options...
North Buffalo Posted June 12, 2017 Report Share Posted June 12, 2017 (edited) Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway. My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment. In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic. In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine. She hit her head four times the rest of the day. Four. We have hope again. It's a good day. Congrats Swamp, this is a big deal, and while reading the further posts, I have hope for my son's seizures. Though he has a brain malformation... lysencephaly pachygyria, a neuromigration issue due to a partial chromosomatic deletion. He is considered a light case but it affects his speech, motor control and he is significantly delayed and will need assistance all his life. He is on Kepra, Tompomax and Depakote for his seizures. Worried about his liver and kidneys because of the depakote. Looking for alternatives. Not sure canniboids are the best but who knows. I will bring it up. Also we are not far from Massachusetts and own property up there so it could be a possibility for us to check it out. Charlie so far has gone from 2 seizures a day to usually 2-3 in groups every 2-3 weeks. Still they are scary for him, he is 10 though sadly we are use to it. Anything with Children, many in my Charlie's group who have autism could benefit would a great thing. Keep us posted.... we need to know, keep spreading the word. Edited June 12, 2017 by North Buffalo Quote Link to comment Share on other sites More sharing options...
LTS Posted June 12, 2017 Report Share Posted June 12, 2017 It's great news. I know an adult who has Crohns and was finally able to get MM and it has made a HUGE difference for him. Far more impactful than Humira or whatever it is. That stuff was destroying him. The more people know. Quote Link to comment Share on other sites More sharing options...
Eleven Posted June 12, 2017 Report Share Posted June 12, 2017 The pre-legalization era was evil. I had to buy questionable stuff from questionable people. In huge quantities. Just so my fiancee would eat SOMETHING. Just to calm her down a little bit. Anyone who is against medicinal marijuana can right off. As I've said earlier, it is of no interest to me as a recreational thing. Quote Link to comment Share on other sites More sharing options...
josie Posted June 13, 2017 Report Share Posted June 13, 2017 This is wonderful. I'm very happy for you guys! It's great news. I know an adult who has Crohns and was finally able to get MM and it has made a HUGE difference for him. Far more impactful than Humira or whatever it is. That stuff was destroying him. The more people know. I know someone using it for Crohns as well. She has a hell of a time getting it, but it's what keeps her going. I find it absolutely criminal that it's criminalized. Doesn't work for me, but it helps so so many- I'll fight for it. Quote Link to comment Share on other sites More sharing options...
LTS Posted June 13, 2017 Report Share Posted June 13, 2017 I feel like if I ran a presidential campaign based on medical marijuana (truthfully I don't much care if people use it recreationally either) and legalizing the growing of hemp I might win. Oy. Quote Link to comment Share on other sites More sharing options...
SwampD Posted June 13, 2017 Report Share Posted June 13, 2017 (edited) I'd vote for you. We are still working out the dosing (trying to give her as little as possible and at which times of the day yet still be effective), but so far so good. Hands down, this is the best result we have seen in any medication we have given her so far, mostly in that, well, we got a result. In just a few short days, we went from looking at homes to put her in because we felt we couldn't keep her safe anymore, to looking into where our next camping trip is going to be. Congrats Swamp, this is a big deal, and while reading the further posts, I have hope for my son's seizures. Though he has a brain malformation... lysencephaly pachygyria, a neuromigration issue due to a partial chromosomatic deletion. He is considered a light case but it affects his speech, motor control and he is significantly delayed and will need assistance all his life. He is on Kepra, Tompomax and Depakote for his seizures. Worried about his liver and kidneys because of the depakote. Looking for alternatives. Not sure canniboids are the best but who knows. I will bring it up. Also we are not far from Massachusetts and own property up there so it could be a possibility for us to check it out. Charlie so far has gone from 2 seizures a day to usually 2-3 in groups every 2-3 weeks. Still they are scary for him, he is 10 though sadly we are use to it. Anything with Children, many in my Charlie's group who have autism could benefit would a great thing. Keep us posted.... we need to know, keep spreading the word. Sorry for what you have to go through. Seeing seizures just plain sucks. We never tried Kepra, but she is currently on Depakote. Another medicine (pretty sure it was Lamictal) actually gave her seizures. And you know you situation better than anyone, but I would do everything in my power to get off Risperidone (it's why were are trying MMJ). I've heard nothing but bad things about it. Why do you have to go to Mass. to look into it? I thought MMJ was legal in NYS now. Edited June 13, 2017 by SwampD Quote Link to comment Share on other sites More sharing options...
shrader Posted June 13, 2017 Report Share Posted June 13, 2017 We are still working out the dosing (trying to give her as little as possible and at which times of the day yet still be effective), but so far so good. Hands down, this is the best result we have seen in any medication we have given her so far, mostly in that, well, we got a result. How does that work, playing around with the dosage? Is there at least a recommendation or do you have to completely wing it? Quote Link to comment Share on other sites More sharing options...
SwampD Posted June 13, 2017 Report Share Posted June 13, 2017 How does that work, playing around with the dosage? Is there at least a recommendation or do you have to completely wing it? It's kinda both. There is a recommended dose and you have to wing it (not dissimilar from pharma meds, though). The only difference is that it's almost impossible to overdose on THC (I mean, I'm not saying that someone couldn't smoke 37 hay bales worth of pot, I'm just thinking it might be a little impractical). When I was making it myself, we would get her seizures and behavior under control, and then have to make a new batch and have no idea if they were the same strength (they weren't) and then have to play with the dosing all over again. It's why we stopped MMJ in the first place. When I give her a dose now, I know I am giving her 10mg THC/1mg CBD. every time. We'll adjust based on that. Quote Link to comment Share on other sites More sharing options...
blugold43 Posted June 13, 2017 Report Share Posted June 13, 2017 Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway. My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment. In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic. In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine. She hit her head four times the rest of the day. Four. We have hope again. It's a good day. SwampD I am thrilled to read this, and I hope the effects continue. my heart goes out to you, as our worst days don't saound anything like what you're going through. I am also very interested, as it sounds like this type of treatment might benefit my son as well. So, not really being the cannabis "type," I have some questions... can you be more specific about what the medicine is? is it an oil produced from cannabis? my son does not have seizures (any more), but one way he presents is severe anxiety about day-to-day stuff (school and social situations especially) that is really holding him back from learning. he also has an EATING DISORDER- stemming from the anxiety- that we just can't get a handle on. It is incredibly frustrating. he is in the 1st percentile for weight and has been for a long time. i am starting to think this (medical marijuana) in a path we want to look into. Quote Link to comment Share on other sites More sharing options...
CallawaySabres Posted June 13, 2017 Report Share Posted June 13, 2017 Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway. My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment. In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic. In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine. She hit her head four times the rest of the day. Four. We have hope again. It's a good day. This makes me very happy Quote Link to comment Share on other sites More sharing options...
nfreeman Posted June 13, 2017 Report Share Posted June 13, 2017 Very happy to see this, Swamp. And for the other similarly situated fathers: good man. Quote Link to comment Share on other sites More sharing options...
Taro T Posted June 13, 2017 Report Share Posted June 13, 2017 I'd vote for you. We are still working out the dosing (trying to give her as little as possible and at which times of the day yet still be effective), but so far so good. Hands down, this is the best result we have seen in any medication we have given her so far, mostly in that, well, we got a result. In just a few short days, we went from looking at homes to put her in because we felt we couldn't keep her safe anymore, to looking into where our next camping trip is going to be. Sorry for what you have to go through. Seeing seizures just plain sucks. We never tried Kepra, but she is currently on Depakote. Another medicine (pretty sure it was Lamictal) actually gave her seizures. And you know you situation better than anyone, but I would do everything in my power to get off Risperidone (it's why were are trying MMJ). I've heard nothing but bad things about it. Why do you have to go to Mass. to look into it? I thought MMJ was legal in NYS now. I often find myself stating I can't image the sorrow that others are going though (fortunately) but I'm not sure I can fully image the joy in that statement. Congrats. Hope you manage to keep her dialed in even better. :thumbsup: Quote Link to comment Share on other sites More sharing options...
North Buffalo Posted June 13, 2017 Report Share Posted June 13, 2017 I'd vote for you. We are still working out the dosing (trying to give her as little as possible and at which times of the day yet still be effective), but so far so good. Hands down, this is the best result we have seen in any medication we have given her so far, mostly in that, well, we got a result. In just a few short days, we went from looking at homes to put her in because we felt we couldn't keep her safe anymore, to looking into where our next camping trip is going to be. Sorry for what you have to go through. Seeing seizures just plain sucks. We never tried Kepra, but she is currently on Depakote. Another medicine (pretty sure it was Lamictal) actually gave her seizures. And you know you situation better than anyone, but I would do everything in my power to get off Risperidone (it's why were are trying MMJ). I've heard nothing but bad things about it. Why do you have to go to Mass. to look into it? I thought MMJ was legal in NYS now. Did not know that just assumed, will need to check it out. Depakote seems to help the best but like you know its a coctail. Also he has a vagal nerve stimulator, about to get another that monitors and can react to heart rate changes often associated with seizures. Helps nullify the neuro pulses during a seizure and makes them shorter Quote Link to comment Share on other sites More sharing options...
biodork Posted June 14, 2017 Report Share Posted June 14, 2017 Not sure if anyone cares or will even find this interesting, but I kinda want to put this out there, anyway. My wife and I went to a new dispensary today. It was 2 hours away and totally worth the trip. It was so nice to feel like we were actually getting medicine from a medical facility. Our old dispensary kinda felt like we were just getting pot from a bunch of stealth hippies who felt like they were pulling something over on the gub'ment. In the past few weeks, I have watched my daughter hit herself in the head more than 1000 a day (I counted). It got so bad that we had to buy her 2 helmets, one for school and one for home, so she wouldn't concuss herself (something she did in February). While Autism is not yet on the list of conditions that Drs can prescribe MMJ for in NJ, we are "lucky" enough to get it for my daughter for her seizures. If we happen to get some off label benefits from it, well then fantastic. In the past, I have had to spend days in Walter White conditions, basically trying to turn bags of weed into medicine, not knowing the potency or efficacy of what I had made. Today, on the way home, We gave her a single dose of pre-made, tested oil,… medicine. She hit her head four times the rest of the day. Four. We have hope again. It's a good day. Thanks, all. And Doohickie, it seems like all my wife and I do is talk about our daughter, I just figured everyone else is as bored with the topic as I am. :lol: Day two and we really can't believe the results. We hid the helmets. Out of sight, out of mind. We don't want to remind her why she needed them and so far so good. There are also a bunch of other behaviors, too numerous to list, that are all lessened, if not gone altogether. I'm always skeptical of anything new we try and I really wasn't expecting anything. We're kinda dumbstruck. I'd vote for you. We are still working out the dosing (trying to give her as little as possible and at which times of the day yet still be effective), but so far so good. Hands down, this is the best result we have seen in any medication we have given her so far, mostly in that, well, we got a result. In just a few short days, we went from looking at homes to put her in because we felt we couldn't keep her safe anymore, to looking into where our next camping trip is going to be. Sorry for what you have to go through. Seeing seizures just plain sucks. We never tried Kepra, but she is currently on Depakote. Another medicine (pretty sure it was Lamictal) actually gave her seizures. And you know you situation better than anyone, but I would do everything in my power to get off Risperidone (it's why were are trying MMJ). I've heard nothing but bad things about it. Why do you have to go to Mass. to look into it? I thought MMJ was legal in NYS now. So much awesome. Really happy to hear that you're finding something that works for you / her, Swamp! :beer: Quote Link to comment Share on other sites More sharing options...
Sabres Fan in NS Posted June 26, 2017 Report Share Posted June 26, 2017 Thanks, all. And Doohickie, it seems like all my wife and I do is talk about our daughter, I just figured everyone else is as bored with the topic as I am. :lol: Day two and we really can't believe the results. We hid the helmets. Out of sight, out of mind. We don't want to remind her why she needed them and so far so good. There are also a bunch of other behaviors, too numerous to list, that are all lessened, if not gone altogether. I'm always skeptical of anything new we try and I really wasn't expecting anything. We're kinda dumbstruck. This is the best news I have heard in quite some time. So glad that it was you posting it. You have no idea.... It should be completely legal for medical reasons. I can't/don't enjoy it recreationally and haven't for a very long time, but grass has medicinal properties that are just unsurpassable. It is medically legal in Canada and has been for some time. In a year it will be legal for everybody. Quote Link to comment Share on other sites More sharing options...
Eleven Posted June 26, 2017 Report Share Posted June 26, 2017 This is the best news I have heard in quite some time. So glad that it was you posting it. It is medically legal in Canada and has been for some time. In a year it will be legal for everybody. No it won't. We'll keep using opiates because they're incredibly profitable for pharma companies and we'll keep ignoring the growing heroin crisis that has resulted. Quote Link to comment Share on other sites More sharing options...
Sabres Fan in NS Posted June 26, 2017 Report Share Posted June 26, 2017 No it won't. We'll keep using opiates because they're incredibly profitable for pharma companies and we'll keep ignoring the growing heroin crisis that has resulted. OK, but pot will be legalised in Canada on July 1, 2018 for personal consumption. Quote Link to comment Share on other sites More sharing options...
Eleven Posted June 26, 2017 Report Share Posted June 26, 2017 OK, but pot will be legalised in Canada on July 1, 2018 for personal consumption. Sorry--I thought you meant "everybody" as in the whole world and you were predicting that it would be liberalized. Yeah, I'm aware of your PM's commitment to legalizing weed. Seems like a smart move. Doesn't really affect me. Quote Link to comment Share on other sites More sharing options...
Sabres Fan in NS Posted June 26, 2017 Report Share Posted June 26, 2017 Sorry--I thought you meant "everybody" as in the whole world and you were predicting that it would be liberalized. Yeah, I'm aware of your PM's commitment to legalizing weed. Seems like a smart move. Doesn't really affect me. You are close to the border, so maybe someone could set you up ... :flirt: Quote Link to comment Share on other sites More sharing options...
Jerry Jabber Posted June 26, 2017 Report Share Posted June 26, 2017 My middle child, Ollie, has recently been assessed as Autistic. We haven't been up to Strong for the official full medical diagnosis, apparently this takes months, but we've recently been approved by the County for 4 extended sessions of in-home therapy per week. Ollie is 2 years, 4 months, and was identified by the Early Intervention folks as having severe cognitive and communication delays, and moderate physical delays. I know some of you here in Sabre Space have special needs kids of your own, so I'm throwing this out there asking for any advice. Either with Autism, or dealing with the various programs designed to help kids with special needs. Ollie is an awesome kid. I just want as much information as I can get, so I can help him out as much as possible. I'm scared, as any parent would be, I think, but I'm also excited to be able to help him adapt to a world designed for people who interact with it a little differently than he does. Thanks. Have you applied for Medicaid yet? If not, apply for the EDCD waiver. The EDCD waiver is geared towards elderly patients that need home care, but right now it's the main one that kids with Autism get approved for. I know in VA, we have "Moms in Motion" which is a group you can call and get help applying for the EDCD waiver. I'm not sure what's in NY, but I'm sure you can find some on the internet. If you're able to get Medicaid, it will open up a lot of doors for autism services as a lot of places only accept Medicaid. By any chance if you get denied for the EDCD waiver, you can apply for the DD waiver, but you can be on a waiting list for years. Hope this helps. Quote Link to comment Share on other sites More sharing options...
SwampD Posted June 27, 2017 Report Share Posted June 27, 2017 This is the best news I have heard in quite some time. So glad that it was you posting it. Thanks NS. Two weeks in and it still seems to be working. Great to see you back. Quote Link to comment Share on other sites More sharing options...
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