sassenach Posted June 3, 2018 Share Posted June 3, 2018 Ds is on a bad run of intractable seizures that have landed us in the hospital every few days for 2 weeks now. We’re throwing the whole pharmacy at him with little results. I’ve heard mixed reviews of CBD. Like all other meds, it seems like it helps some tremendously and others not at all. We have a pretty good dispensary around here. I’m looking for some anecdotes. What ratio did you start with? Did you work up to higher ratios? What kind of results did you see? 1 2 Quote Link to comment Share on other sites More sharing options...
unsinkable Posted June 3, 2018 Share Posted June 3, 2018 No experience. I hope someone else can help you out. I'm really sorry your son is in a bad place now. ? (((hugs and prayers))) 2 Quote Link to comment Share on other sites More sharing options...
J-rap Posted June 3, 2018 Share Posted June 3, 2018 I don't have experience, but have read a lot about Charlotte's Web CBD oil and found it fascinating. I think it was for a particular form of epilepsy. Our dd suffers from severe chronic migraines (constantly), and because we have epilepsy on both my and my dh's side of the family, doctors have wondered if there could be some connection. So, she did try CBD in various forms for about six months, but with no success. BUT, I've heard some pretty amazing stories regarding CBD and epilepsy, and wouldn't hesitate to try it. I believe I read an article (related to Charlotte) that gave very specific amounts, etc. Have you looked into the ketogenic diet? All the best to your son!! That must so, so tough. I'm really sorry. 2 Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 3, 2018 Author Share Posted June 3, 2018 1 hour ago, J-rap said: I don't have experience, but have read a lot about Charlotte's Web CBD oil and found it fascinating. I think it was for a particular form of epilepsy. Our dd suffers from severe chronic migraines (constantly), and because we have epilepsy on both my and my dh's side of the family, doctors have wondered if there could be some connection. So, she did try CBD in various forms for about six months, but with no success. BUT, I've heard some pretty amazing stories regarding CBD and epilepsy, and wouldn't hesitate to try it. I believe I read an article (related to Charlotte) that gave very specific amounts, etc. Have you looked into the ketogenic diet? All the best to your son!! That must so, so tough. I'm really sorry. Thanks for the info. I’ll check out Charlotte’s web. He was on the ketogenic diet for a couple of years. From about 2-4 years old. We had mixed results. One of his seizure types was eliminated permanently. The other wasn’t helped at all. It was definitely worth it, but also pretty challenging. He didn’t have a gtube then. I think it would be easier now with the tube. I’m definitely willing to circle back around to it but it feels like more of a far off solution rather than immediate. I’m desperate for the magic bullet for this one. 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 3, 2018 Author Share Posted June 3, 2018 1 hour ago, Arctic Mama said: Haleigh’s Hope is super popular on the baby’s group, and we will use it if we stop responding well to our current meds. The side effects seem to be lower than ACTH, so I’d be inclined to use the CBD before that. There are a few kids for whom it hasn’t helped but the instances of reported side effects aside from drowsiness initially has been noticeably low on that group. Thanks for the tip. I really don’t think anything could be worse than his current level of drowsiness. If he’s not sleeping, he’s seizing. It’s bad. Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 3, 2018 Author Share Posted June 3, 2018 27 minutes ago, Arctic Mama said: I’m sorry, that just sucks. And there is no underlying infection or growth spurt worsening it that might clear up on its own? Are they thinking this could be the new normal? If that’s the case in terms of drowsiness, have they altrady something like Valium/valproic acid and CBD? Sometimes going in with a combo of treatments seems to be the sweet spot for our epileptic kiddos, especially after a course of steroids. This has kind of been out of the blue. The problem is a simple motor focal seizure that has always just been a very occasional, nothing seizure. Suddenly it’s cycling every 3-5 minutes for hours. The day this started it took us 9 hours to get it to stop. No infection. They checked him for everything. We’re treating it idiopathically. Quote Link to comment Share on other sites More sharing options...
unsinkable Posted June 3, 2018 Share Posted June 3, 2018 Ugh. That sounds awful. We went thru something similar when nothing was stopping her seizures. At one point DD's doc told us she was seizing in so many different spots they didn't know what to address first. None of the first line choices were helping and so they just kept cycling thru second/third line choices until a bunch of them together gave her a number of daily/weekly seizures that she could live with. It took months to get to that point, I'm sorry to say. 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 3, 2018 Author Share Posted June 3, 2018 1 hour ago, unsinkable said: Ugh. That sounds awful. We went thru something similar when nothing was stopping her seizures. At one point DD's doc told us she was seizing in so many different spots they didn't know what to address first. None of the first line choices were helping and so they just kept cycling thru second/third line choices until a bunch of them together gave her a number of daily/weekly seizures that she could live with. It took months to get to that point, I'm sorry to say. Yeah, I have a distinct feeling that there is not going to be a quick solution. I'm glad that they finally found a combo that was at least a little helpful. 39 minutes ago, Arctic Mama said: I thought motor focals are what happened the Benny yesterday afternoon, though thankfully it was short duration. There was some eye movement and zoning out too, though, so it could be more complex. But it was out of the blue with his normal seizure type completely controlled, so we are nervous about escalation in severity. Nine hours to suppress is crazytown, your poor son! I’ll be praying you find a good combo of treatments to give him some neurological control back. I’m so sorry these popped up ? It can make you crazy to just watch and wait. Praying that Benny's is just a little blip. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted June 3, 2018 Share Posted June 3, 2018 I have an acquaintance whose child takes CBD oil (of the Charlotte’s Web variety). There have been improvements in sleep quantity and quality and in motor control but not in other areas. Dd blessedly did well with valproic acid + lamictal. 1 Quote Link to comment Share on other sites More sharing options...
EKS Posted June 3, 2018 Share Posted June 3, 2018 I know nothing about this other than that it seems interesting, but have you tried a ketogenic diet? https://www.epilepsysociety.org.uk/ketogenic-diet#.WxR8eFMvxTY 1 Quote Link to comment Share on other sites More sharing options...
Tsuga Posted June 3, 2018 Share Posted June 3, 2018 No, however I know a number of people who use it to sleep (legally). Let me know if you have any questions. I am not a doctor so I would first say, talk to a doc. I would not have any issues trying it as a treatment on a child under medical supervision. When properly dosed it is no stronger than cold medicine--if that. I hope you find a treatment that works soon. 1 Quote Link to comment Share on other sites More sharing options...
unsinkable Posted June 4, 2018 Share Posted June 4, 2018 How's our guy today? You've all been on my mind. (((hugs))) 1 Quote Link to comment Share on other sites More sharing options...
sassenach Posted June 4, 2018 Author Share Posted June 4, 2018 1 hour ago, unsinkable said: How's our guy today? You've all been on my mind. (((hugs))) Sleepy but we've made it almost 24 hours without having to use valium. We have 2 neuro appointments next week, so I'm just hanging on by my fingernails until then. Thanks for checking on us. 4 Quote Link to comment Share on other sites More sharing options...
littlebug42 Posted June 5, 2018 Share Posted June 5, 2018 My cousin's son has Dravet Syndrome, a catastrophic epilepsy. They have had fairly good luck with the Charlotte's Web CBD oil although it seemed to help more in the beginning than it is now that he has been on it for more than a year. His brother did better with it but unfortunately, he passed away last November so I don't know how that would have held out had he been on it the same amount of time. He is on several medicines so I am not sure about side effects but he is still pretty energetic most of the time except when he is having a lot of the myoclonic seizures. He definitely still has good and bad days. I know that he is better with it than without. 1 Quote Link to comment Share on other sites More sharing options...
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