tag:blogger.com,1999:blog-5895440453335552117.post17278921772774861..comments2024-03-28T14:22:38.379-04:00Comments on calvin's story: easierChristy Shakehttp://www.blogger.com/profile/00106761191160700997noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-5895440453335552117.post-41979704803079514292014-04-30T15:40:27.503-04:002014-04-30T15:40:27.503-04:00yes, it is the ACDC tincture i am considering. i t...yes, it is the ACDC tincture i am considering. i think that the thca oil i made is helping some, but not as much as i had hoped because i want to get calvin off of the clobazam at the very least. if bio mom is uninvolved, perhaps try synergy's acdc tincture just to see if it works. thca tincuture works well for many kids. i think it will be a good foundation while we add cbd oil and reduce clobazam. at least i'll cross my fingers!Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-26959593045503801542014-04-30T15:35:37.197-04:002014-04-30T15:35:37.197-04:00I see. I will definitely call them as the legalit...I see. I will definitely call them as the legality of it all may be tricky for us as we have another adult in the picture, her biological mother, who is fairly and sadly uninvolved. I can't put my concerns about this on a blog but I'm sure you can understand them. Synergy would probably be able to clear them or confirm them for me. Do you feel your homemade is not giving you results? I read about their ACDC tincture - is that what you're interested in? I am floored that CBD is not available for children in every state. I'm convinced that she could be on that instead of the 2mg clonopin, and whether it controls her seizures any better, she would at least be receiving the sedative benefits without the ridiculous side effects and dependency. Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-23173886878346520192014-04-30T13:39:48.204-04:002014-04-30T13:39:48.204-04:00no, calvin is on a homemade thca cannabis oil. and...no, calvin is on a homemade thca cannabis oil. and to be clear, you do not want to use hemp oil. use cannabis oil, which you can get from synergy at the link above. call them with your questions. i might go this route, too.Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-9683016634212184402014-04-30T13:35:53.258-04:002014-04-30T13:35:53.258-04:00Thank you so much, Christy. I will definitely loo...Thank you so much, Christy. I will definitely look into these. Did you try Calvin on hemp first?Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-73832929514998926342014-04-30T13:04:26.064-04:002014-04-30T13:04:26.064-04:00dear amy, since you are in texas i would highly re...dear amy, since you are in texas i would highly recommend you consider and contact someone at a california company called synergie. they have high CBD oils that are so low in THC that they are supposedly considered hemp, which is legal. high CBD oils don't help everyone but seem to help a lot of children who don't respond to pharmaceuticals. check out these two links: http://www.projectcbd.org/faq/ and http://synergycbd.com/tincture/ Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-76673354944466158672014-04-30T12:58:48.287-04:002014-04-30T12:58:48.287-04:00Thank you for your fast reply - the last two weeks...Thank you for your fast reply - the last two weeks have been a bit hellish, and after my tears in front of the neuro team I thought - I'm losing it today... and instinctively I went to your site today. Having never met, never talked, I know you understand, and that is comforting. If marijuana isn't legal in TX is cannabis oil then? Is it the same thing? we are so reluctant to go back on topomax, they talked earlier about trileptal but because it's for focal and she has generalized they didn't feel she would benefit. we are willing to try a new drug - such a rollercoaster of meds...Amynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-21676615431499907252014-04-30T12:20:20.845-04:002014-04-30T12:20:20.845-04:00dear amy, is cannabis oil an option for hailey? we...dear amy, is cannabis oil an option for hailey? we did return to a drug once, keppra, but about six years apart. a friend had told me that keppra had not worked for her daughter the first time but trying it again years later it did. i do not know if that is the case with topomax. it would seem wise to try a different drug if there are any other options. i am sorry you and hailey are having such a hard time of it. my heart goes out to you. i wish there was something more that i could do. xoxoChristy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-52323515457481044152014-04-30T12:14:02.261-04:002014-04-30T12:14:02.261-04:00Your last question -- amen... I have been in the ...Your last question -- amen... I have been in the hospital with hailey for 4 days now. She had 80 grand mals in 4 days and it got to where we could no longer home manage it. As Mateo says above, there are no answers. I wept in front of the neuro team this morning, unable to comprehend their suggestion to put her back on topomax when at 250mg/full strength two years ago we had a hospital visit and a year ago on topomax at 150mg we were here as well. Now when we've weaned her off, that seems to be the answer? I wish things were easier, too. Thank you for writing about your frustrations. It eases my mind, and validates my own feelings. Sending you strength today and hope you're getting rest. xoAmynoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-1207260216991536122014-04-28T06:37:46.294-04:002014-04-28T06:37:46.294-04:00thank you all.thank you all.Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-23566052302821971852014-04-27T21:20:35.422-04:002014-04-27T21:20:35.422-04:00Also sending you good thoughts, prayers and streng...Also sending you good thoughts, prayers and strength. I wish things were easier for you too, and that Calvin did not have to suffer so. I always want to let you know, though, that your writing is a gift that you share, and that gift is rare and beautiful indeed.<br />Blessings and warm wishes for easier days ahead.<br />DianeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-60904291848624704632014-04-27T17:28:55.418-04:002014-04-27T17:28:55.418-04:00dear trish, your words are so gentle and loving. t...dear trish, your words are so gentle and loving. thank you. xoChristy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-74010305571555227932014-04-27T16:57:56.538-04:002014-04-27T16:57:56.538-04:00I ask myself similar questions, Christy, even thou...I ask myself similar questions, Christy, even though our circumstances are quite different. I don't want to have to ask who I would be if things were easier but I do; I don't want to become bitter but when I hear myself snap, I wonder if I already am; I don't want to look back on my life and wish I had made other choices. These thoughts are fleeting but they do creep into my head. Respite helps a little. Sometimes just the dawn of a new day helps significantly. You've had a rough week, be gentle with yourself. Wishing you easier days. Hugs, TrishTrish Hughes Kreishttps://www.blogger.com/profile/04995070221130924508noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-45380532904823118222014-04-27T08:34:52.409-04:002014-04-27T08:34:52.409-04:00mateo, always good to hear from you but sorry for ...mateo, always good to hear from you but sorry for the reasons why.Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-65510059557830413162014-04-26T23:35:36.793-04:002014-04-26T23:35:36.793-04:00You wouldn't be who you are, nor would Calvin ...You wouldn't be who you are, nor would Calvin be who he is. I used to have a blog called TiredMummy because I was beyond tired, all the time. And then life changed. My life so farhttps://www.blogger.com/profile/16721270441968035994noreply@blogger.comtag:blogger.com,1999:blog-5895440453335552117.post-78588843747352553822014-04-26T15:41:38.797-04:002014-04-26T15:41:38.797-04:00Damn good questions! No answers! I feel a lot of b...Damn good questions! No answers! I feel a lot of bitterness when posing such questions myself, I would like to blame someone but who?Mateohttps://www.blogger.com/profile/17825206466043109891noreply@blogger.com