tag:blogger.com,1999:blog-4863417462909147257.post2338516065561594226..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: Epilepsy 101 and the Cleveland Clinic Elizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger12125tag:blogger.com,1999:blog-4863417462909147257.post-46848387523135361072014-09-27T09:08:14.273-07:002014-09-27T09:08:14.273-07:00Great read. Great writing. Keep up the inspired wo...Great read. Great writing. Keep up the inspired work.<br /><br />In 2001 our son was in a bike accident that eventually developed into seizures years later. Like you, we experienced a long saga of hope and drama that is remarkable from that day forward. I took the path of starting to work in the healthcare institutions where our son was getting care, since working with docs from the "outside" wasn't acceptable to us. What a wild ride that turned out to be. After being part of Children's Hospital in Denver, I also worked at Cleveland Clinic, so really appreciate your post. The "Clinic" has a certain irreverence about the institution of healthcare that I found refreshing and innovative. But they also have their limits, especially when it comes to stepping out of the boundaries (mythology) of care. So our family moved back to our home in Colorado, partly to ensure that we had ready access to the fledgling cannabis revolution. So like you, as much as we see hard evidence of improvements from such "alternative" forms of therapy as cannabis (including full cessation of seizure activity), the heavy hand of the federal DOJ, DEA, ATF and FDA thwarts the inspirations of hope by parents and researchers alike here in the Rockies. But like I assume you are, we are well beyond anger and disbelief in working with the neurological establishment, and the unfortunate paradigm of big pharma's commercial motivations. As much as my wife and I have dreamed of the possibility of taking some fantasy leap forward to stop seizures for our son, we simply return to reality with poise and commitment everyday, and a step-at-a-time response to seizures as they arrive...for now. And, we never miss the opportunity to change one medical "expert's" mind at-a-time regarding how to treat nerves acting badly. My deep suspicion however is whispering to me - cannabis therapy is trying to teach us something about the underlying mechanism of how the brain works. There's still more art than science at play right now in the minds and hands of our most dedicated neurological providers. Doctors admitting ignorance however, and embracing a burning desire to learn the "truth" about something, is a rare quality. But Cleveland Clinic, and the Case Western Reserve University medical school next door, seems to share that level of intensity and integrity. For us, at least for now, that creates hope. But so much more needs to be done.Bob & Sherrynoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-45247564577485802812014-05-04T03:03:32.909-07:002014-05-04T03:03:32.909-07:00Hi! I am inspired to you for your blogging and als...Hi! I am inspired to you for your blogging and also wish to your best of luck. <a href="http://supportsineducation.com/" rel="nofollow">individual education plan</a> We provide special help for parents and child for special needs. To evaluate your child`s special needs you can take our help. Come with us for better education. Anonymoushttps://www.blogger.com/profile/14302354966604837691noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-12707632899273008562014-05-02T06:31:32.072-07:002014-05-02T06:31:32.072-07:00I am so impressed with how much you have been doin...I am so impressed with how much you have been doing to educate, support, advocate for and empower in the world of epilepsy. I do remember how little there was out there when our daughters were getting diagnosed over 18 years ago. I remember Carlie's neurologist saying, in response to my question as to whether these long episodes of status epileptus were hurting her brain development: "Seizures don't cause any harm to the brain." No explanation followed. Ok, maybe that was his way of saying the harm was already there, but when i think back on it i feel like he was just an arrogant, ill informed narcissistic dude who didnt feel like engaging with a "neurotic mother' asking questions. Turns out, going into status epileptus actually does harm the brain and unfortunately has a very high mortality rate. I quote "The danger of terminal damage to the nervous system, and ultimately the rest of the body, becomes a serious threat. Increased intracranial pressure and relative hypotension occurring with convulsive Status Epileptus will result in impaired cerebral perfusion pressure and exacerbation of neurologic and systemic dysfunction." Funny how i was told her seizures did nothing to hurt her????Alicia Dhttps://www.blogger.com/profile/06244714478310893367noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62149361727859473552014-05-01T22:11:15.428-07:002014-05-01T22:11:15.428-07:00Yes, Kristen, I remember that line, too. Wasn'...Yes, Kristen, I remember that line, too. Wasn't it in Freeman's book? I remember, also, that only "8% of children diagnosed with infantile spasms go on to have normal development." I can't remember when I gave up on the 8% and became the 92%.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-56293986274958398682014-05-01T18:35:58.816-07:002014-05-01T18:35:58.816-07:00"A rare and catastrophic form of epilepsy&quo..."A rare and catastrophic form of epilepsy" - those were the first words I read when I looked up infantile spasms and I'll always remember that moment. Those webinars sound so much more valuable than my lonely research!Kristenhttps://www.blogger.com/profile/03207368263747329098noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-21357697331871826112014-05-01T16:37:02.831-07:002014-05-01T16:37:02.831-07:00Your writing illuminates the dark days and how far...Your writing illuminates the dark days and how far we've come. It is searing. Hope for a sea change.37paddingtonhttps://www.blogger.com/profile/12400464105403622384noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-91098338135844271762014-05-01T14:34:56.255-07:002014-05-01T14:34:56.255-07:00Allison, I've read about that, too, but I can&...Allison, I've read about that, too, but I can't say I care that much! I have heard that cursive writing is actually good for the brain, but it seems like an uphill battle given the accessibility of alternate communication and computers! Neither of my sons ever writes in cursive anymore -- and while I happen to have really nice handwriting, I'm not sure what benefits it serves!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-18098839329116725172014-05-01T10:28:00.858-07:002014-05-01T10:28:00.858-07:00I helped to do a webinar on cannabis and epilepsy ...I helped to do a webinar on cannabis and epilepsy over a year ago, Christy! I believe it was recorded and will look for the link. You might not remember, but we engaged Josh Stanley for that webinar. It was not widely received -- those were the dark days!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-40670867569683984782014-05-01T10:11:42.941-07:002014-05-01T10:11:42.941-07:00where is the webinar about cannabis and epilepsy?where is the webinar about cannabis and epilepsy?Christy Shakehttps://www.blogger.com/profile/00106761191160700997noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-58803566215832132482014-05-01T10:00:58.230-07:002014-05-01T10:00:58.230-07:00Yes and WOW! Oh, Elizabeth. You have no idea how p...Yes and WOW! Oh, Elizabeth. You have no idea how powerful your voice is. How far your words reach and will reach. <br />You are a blessing on this earth and I mean that. Ms. Moonhttps://www.blogger.com/profile/09776404747858099919noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-30315681347569089502014-05-01T09:52:01.751-07:002014-05-01T09:52:01.751-07:00Apropos of nothing, look at how beautiful the curs...Apropos of nothing, look at how beautiful the cursive writing on the blackboard is. I have read there is talk of discontinuing the teaching of cursive, which seems to be a shame. <br />Allisonhttps://www.blogger.com/profile/02475433199308666648noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-23319356886418838222014-05-01T09:35:44.515-07:002014-05-01T09:35:44.515-07:00It is for things just such as this that I am treme...It is for things just such as this that I am tremendously grateful for the Internet. kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.com