Medical Marijuana Shouldn’t be for ‘Adults Only’

May 15, 2013

My 9-year-old daugh­ter has Aicardi syn­drome, a rare genetic dis­or­der that causes extremely hard-to-control seizures, debil­i­ta­tion, dis­abil­ity and early mor­tal­ity. She began hav­ing seizures at three months of age, and since that time has had mul­ti­ple seizures every day, with rare excep­tion — prob­a­bly to the tune of nearly 200,000 seizures in her life­time. For most fam­i­lies, even one such day would be an emer­gency. For ours, it is the norm. My daugh­ter is a beau­ti­ful, lov­ing girl who goes to school, enjoys music and parks, loves to be read to and adores look­ing at big, mod­ern art in muse­ums. She can­not walk inde­pen­dently, can­not talk and wears dia­pers. Every day she is at risk of Sud­den Unex­pected Death in Epilepsy, or SUDEP, which accounts for 34 per­cent of all sud­den deaths in chil­dren. She is one of the 3 mil­lion Amer­i­cans who have epilepsy, and one of the 40 per­cent whose seizures can­not be con­trolled by anti-seizure drugs. She has tried 10 anti-seizure med­ica­tions as well as a high-protein/low-carbohydrate diet called the keto­genic diet; she takes three anti-seizure med­ica­tions at once and has a vagus nerve stim­u­la­tor implant that sends mild elec­tri­cal pulses to the brain. These drugs help her, but she nonethe­less expe­ri­ences an aver­age of three seizures every day. More­over, the med­ica­tions cause per­sis­tent side effects that neg­a­tively impact her qual­ity of life, par­tic­u­larly her gas­troin­testi­nal, bone, den­tal, cog­ni­tive and men­tal health. The Illi­nois Sen­ate Exec­u­tive Com­mit­tee recently voted, 10–5, to move the House-passed med­ical mar­i­juana leg­is­la­tion to the Sen­ate for a vote. The bill is expected to pass, and though Gov. Pat Quinn has not com­mit­ted to sign­ing it, the gen­eral expec­ta­tion is that the bill will become law. This should be received as great news for the many peo­ple with “debil­i­tat­ing” con­di­tions that the bill is sup­posed to help — peo­ple for whom med­ical sci­ence has doc­u­mented real, mea­sur­able and safe out­comes of the con­trolled use of cannabis or its com­po­nent of chem­i­cal com­pounds. It’s too bad that the leg­is­la­ture has ignored the med­ical needs of some of the most debil­i­tated, and most vul­ner­a­ble, patients in the state: chil­dren with epilepsy. Imag­ine her father’s and my reac­tion upon learn­ing that the leg­is­la­ture, in its con­cern not to send a “mes­sage” to kids that it is safe to smoke mar­i­juana, decided that kids like ours, for whom med­ical cannabis has the poten­tial to be as safe and effec­tive as typ­i­cal anti-seizure drugs, should be excluded from the ben­e­fits of this new law. They have done so, I hope, only out of igno­rance. Take, for instance, the par­ent sur­vey con­ducted by Stan­ford Uni­ver­sity neu­rol­ogy researcher Dr. Cather­ine Jacob­son. These par­ents had chil­dren with some of the most difficult-to-treat syn­dromes of epilepsy found in chil­dren: Dravet syn­drome, Doose syn­drome and Lennox-Gastaut syn­drome. All of the kids were being treated with a nonpsy­choac­tive com­pound made from cannabis — cannabid­iol. Their par­ents report remark­able results — 83 per­cent noted that their children’s seizure fre­quency had been reduced. Two-thirds of these chil­dren achieved a greater than 80 per­cent reduc­tion in seizure inci­dence. Seventy-five per­cent of the par­ents reported suc­cess in wean­ing their kids from other ASDs; a sim­i­lar pro­por­tion noted improved sleep, mood and alert­ness in their chil­dren. Most impor­tant, the survey’s author notes that com­mon neg­a­tive side effects reported on other ASDs were notably absent on cannabid­iol, includ­ing rash, vom­it­ing, nau­sea, con­fu­sion, insom­nia, anx­i­ety, irri­tabil­ity, dizzi­ness and aggres­sive behav­ior. There is no like­li­hood that my daugh­ter will become a drug addict from using a com­pound within cannabis in a med­ically con­trolled set­ting. There is, how­ever, a good chance that par­tic­i­pa­tion in a con­trolled study of these com­pounds could open the door to new treat­ments for her, and the many chil­dren like her, who des­per­ately need med­ical inno­va­tion to save or improve their lives. I urge the bill’s chief spon­sors, Rep. Lou Lang, D-Skokie, and Sen. William Haine, D-Alton, to recon­sider and amend the bill to allow for the med­ically con­trolled and reg­u­lated use of cannabis for pedi­atric and adult patients with uncon­trolled epilepsy. And to all Illi­noisans who know or love some­one with epilepsy, please let your leg­is­la­tors hear your voice on this mat­ter. Mar­garet Storey lives in Evanston. Source: Chicago Tri­bune (IL) Author: Mar­garet Storey Pub­lished: May 15, 2013 Copy­right: 2013 Chicago Tri­bune Com­pany, LLC Web­site: http://​www​.chicagotri​bune​.com/

4cdb07abebl weed.jpg 150x100 Medical Marijuana Shouldn’t be for ‘Adults Only’

See the orig­i­nal post here:
Med­ical Mar­i­juana Shouldn’t be for ‘Adults Only’

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