Could Pot Stop This Baby’s Seizures?

Jul 22, 2013

Toronto par­ents strug­gling with baby Kaitlyn’s Dravet syn­drome call for clin­i­cal tri­als here after mirac­u­lous results in Col­orado. Kait­lyn Pog­son has lived through more seizures than cal­en­dar months. The 9-month-old’s epilepsy sends her tiny body into con­vul­sions that last up to an hour.  Right now they hap­pen every three days, but as she grows the seizures will become more fre­quent – poten­tially top­ping 300 per week. That’s one every 34 min­utes. Every time she has a seizure, Kaitlyn’s par­ents, Barry and Shan­non, call 911 and take her to the emer­gency room, where doc­tors give her anti­seizure drugs that don’t work.  It’s a fright­en­ingly repet­i­tive rou­tine. Kaitlyn’s con­di­tion is so severe they have a spe­cial name for it: Dravet syn­drome.  Not only does it grow worse over time, it’s noto­ri­ously resis­tant to tra­di­tional med­ica­tion. But a grow­ing num­ber of doc­tors and fam­i­lies with Dravet say they’ve stum­bled upon a mir­a­cle drug: mar­i­juana. “Kate is on mor­phine and three other drugs not nor­mally given to chil­dren,” and they’re not work­ing, Barry said.  “Rules are already being bro­ken.  So why not this one?” Dravet syn­drome, also known as Severe Myoclonic Epilepsy of Infancy ( SMEI ), is a cat­a­strophic form of epilepsy that occurs in one in every 30,000 births.  Besides lead­ing to devel­op­men­tal delays, the syn­drome is also asso­ci­ated with higher rates of sud­den unex­plained death. When Kait­lyn had her first seizure at barely 2 months old, Barry didn’t even know what a seizure looked like.  Now, between hos­pi­tal vis­its and work, he’s been research­ing online and dis­cov­ered the story of a lit­tle girl in Col­orado who was able to reduce her seizures by more than 99 per cent. With a small dose of mar­i­juana extract admin­is­tered orally three times a day, lit­tle Char­lotte went from being “flac­cid, lying in her moth­ers arms and unre­spon­sive,” to a walk­ing, talk­ing lit­tle girl, said Dr.  Alan Shack­elford, who over­saw her treat­ment. “The response was instan­ta­neous,” Shack­elford told the Star by tele­phone.  “After the first dose, the seizures stopped =C2=85 and she didn’t suf­fer a seizure for seven days.” Char­lotte now suf­fers one seizure every other week, Shack­elford says, “a remark­able and hereto­fore unprece­dented change.” The key is a strain of mar­i­juana that is high in the active sub­stance Cannabid­iol ( CBD ) but very low in THC, the chem­i­cal that gets you high. Shack­elford says Colorado’s lib­eral mar­i­juana laws allow doc­tors like him to per­form “valid obser­va­tional study” and pub­lish their results.  But fed­eral reg­u­la­tions are still for­mi­da­ble bar­ri­ers for any doc­tor to under­take for­mal clin­i­cal tri­als with a Sched­ule 1 con­trolled sub­stance like cannabis. “We need to study this to know what’s going on, what dosages work best and develop treat­ment for chil­dren and adults alike,” said Shack­elford. At New York Uni­ver­sity, Dr.  Orrin Devin­sky has just received FDA approval for a clin­i­cal trial to study the safety and tol­er­a­bil­ity of CBD in chil­dren with epilepsy. “At this point, I think we really lack much data,” said Devin­sky, who points to promis­ing results in ani­mals, but says the real push came from the anec­do­tal evi­dence pro­vided by par­ents in Col­orado. “I’ve spo­ken with these par­ents, and I think they’re solid, good, lov­ing par­ents, who’ve had very good expe­ri­ences.  Whether this will be borne out by sci­en­tific stud­ies is uncer­tain,” he said. If the tri­als go per­fectly and there are no set­backs, Devin­sky esti­mates that CBD could be approved in the U.S.  in two to three years. In that case, par­ents from across the coun­try – whether in pot-friendly Col­orado or pot-hostile Texas – would have access to the drug. But in Canada, despite our rel­a­tively lib­eral med­ical mar­i­juana laws, there still isn’t a sin­gle trial or study tak­ing place on the use of high-CBD mar­i­juana for juve­nile epilepsy. Health Canada rules allow any­one suf­fer­ing from epilep­tic seizures to apply for a licence to pos­sess mar­i­juana for med­ical pur­poses.  With that licence, you can also apply to grow your own mar­i­juana. The prob­lem for the Pog­sons is that the mar­i­juana avail­able in Canada has far too lit­tle CBD and too much THC to treat an infant like Kait­lyn. “CBD is very dif­fi­cult to pro­cure.  It’s a freak form of mar­i­juana,” said Barry.  “You can’t import it to Canada.” The Pog­sons have started an online peti­tion call­ing on Health Canada to allow CBD into the coun­try and to spon­sor med­ical tri­als to study CBD’s ben­e­fits and the appro­pri­ate dosages. “There isn’t really any other solid hope for a treat­ment out there,” said Barry.  “All the drugs either don’t work, or start out work­ing and then stop.” In the past few months, the Pog­sons moved out of their new house near Oshawa and into a condo down­town, to be closer to the Hos­pi­tal for Sick Chil­dren.  They take shifts watch­ing over Kait­lyn while she sleeps, for fear of a noc­tur­nal seizure.  They’re exhausted, irri­ta­ble and have very lit­tle hope things will improve in the near future if they can’t some­how bring CBD into the coun­try. “This could be what she needs,” Barry said. Med­ical mar­i­juana with­out the high Mar­i­juana grow­ers in Col­orado have devel­oped a spe­cial strain of pot with very lit­tle THC – the chem­i­cal that gets you high – and very high Cannabid­iol ( CBD ), the com­po­nent believed to reduce seizures.  They’ve dubbed it “Charlotte’s Web” in hon­our of their first patient. In a video detail­ing Charlotte’s turn­around, grower Josh Stan­ley says the strain, which has only 0.5 per cent THC and 17 per cent CBD, is “the future of med­ical mar­i­juana.” A sim­i­lar strain is being devel­oped in Israel, says Dr.  Alan Shack­elford, who hopes to secure fund­ing to con­duct clin­i­cal tri­als there. GW Phar­ma­ceu­ti­cals in the UK is devel­op­ing a CBD med­ica­tion to treat epilepsy.  The com­pany, which spe­cial­izes in drugs made from cannabi­noids, has a spray that con­tains a 1:1 ratio of CBD to THC con­tent that’s cur­rently avail­able to mul­ti­ple scle­ro­sis patients in Canada and holds high hopes for a future CBD-heavy med­ica­tion. “There’s been some very promis­ing pre­clin­i­cal work,” said com­pany spokesman Mark Roger­son.  “We think that there is def­i­nitely scope for clin­i­cal tri­als for a prod­uct like this.” Source: Toronto Star (CN ON) Copy­right: 2013 The Toronto Star Con­tact: lettertoed@​thestar.​ca Web­site: http://​www​.thes​tar​.com/ Author: Marco Chown Oved

dfc92e8f19628300.jpg 150x64 Could Pot Stop This Baby’s Seizures?

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Could Pot Stop This Baby’s Seizures?

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