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When Janelle Noble Donovan\u2019s daughter Raegan was diagnosed with Rett syndrome, a rare neurological disorder, and began suffering from seizures caused by an unrelated mass on her brain, she knew right away that she wanted to try to treat her child with cannabis.<\/p>\n
The San Diego resident\u2019s determination was bolstered by the fact that Raegan\u2019s physicians didn\u2019t have much to offer besides pharmaceuticals, which Donovan says failed to offer her daughter relief.<\/p>\n
\u201cYou wouldn\u2019t believe what you\u2019re expected to just deal with,\u201d Donovan tells Cannabis Now.<\/p>\n
Rett syndrome, the result of an X chromosome mutation on the MECP2 gene, is a non-degenerative disorder that affects girls much more often than boys.<\/p>\n
\u201cThe typical presentation you see is an infant will develop normally, reaching milestones like sitting, crawling, making babbling sounds, reaching for toys,\u201d Grace Bazin, a research nurse at Boston Children\u2019s Hospital\u2019s\u00a0Rett Syndrome Program<\/a>, tells Cannabis Now. \u201cAnd then somewhere usually between six and 18 months of age, they have a regression.\u201d<\/p>\n According to Bazin, Rett syndrome expresses itself differently in every individual, but is often characterized by impaired walking, regression of acquired verbal language and hand function, repetitive hand movements, seizures, gastro-intestinal issues, scoliosis and anxiety.<\/p>\n Following Raegan\u2019s diagnosis, Donovan said sleep became a constant battle, and nights without any meaningful shut-eye left Raegan looking \u201cpossessed.\u201d But the first night she dosed her child with around 150 milligrams of full-spectrum THC<\/a>, Raegan managed to grab a then-miraculous four hours of sleep.<\/p>\n From there, Donovan moved to treating her daughter with cannabis in the daytime as well, and says\u00a0high-THC formulations<\/a>\u00a0help Raegan feel and act most like herself. \u201cI care about my daughter\u2019s presence,\u201d Donovan said. \u201cHer personality is really independent, and she wants to do everything on our own. We use an eye gaze machine, and she\u2019s really communicative on it.\u201d<\/p>\n On her better days, Raegan is able to maintain control of her hands, walk, play and communicate via an eye gaze machine, signing and occasionally with words, a condition Donovan credits largely to full-spectrum cannabis oil, or cannabis that retains other compounds such as terpenes <\/a>and flavonoids<\/a>.<\/p>\n \u201cYou get those glimpses, when all the variables align like perfection, you know, the words come out,\u201d Donovan said. \u201cAnd the best feeling is right when she gets the word out. The other day, she said a perfect \u2018Mama.\u2019\u201d<\/p>\n But neither Donovan\u2019s journey with pediatric cannabis nor Raegan\u2019s medical trajectory have been smooth sailing \u2014 often due to healthcare providers who are unaware of the benefits of medical marijuana and willing to chalk up any of Raegan\u2019s health issues to her Rett syndrome.<\/p>\n Following a year and a half of good health post-Rett diagnosis, during which Raegan was able to attend preschool, she started experiencing acid reflux and was put on a \u201cmajor, major\u201d course of antacids. Donovan said this left her daughter susceptible to bacterial infections, and it was during this period of time that Raegan contracted E. coli. She also said the standard of health and good mood Raegan had been able to attain while using cannabis was the driving force behind her certainty that doctors were wrong, and something major was happening with her daughter.<\/p>\n \u201c[The E. coli infection] went undiagnosed for two months,\u201d Donovan said. \u201cDoctors missed it, hospitals missed it. They just kept reading procedures and telling us nothing was wrong, and she was just crazy because she had [Rett syndrome.] They just didn\u2019t believe our baseline. They didn\u2019t believe us because she was too good.\u201d<\/p>\n Eventually, Raegan stopped breathing on a trip to the E.R., which led doctors to discover the infection. \u201cThat one infection was the catalyst that took us down two years of medical fragility, 10 or 12 infections, two intubations and thousands of seizures,\u201d Donovan said.<\/p>\n \u201cWe would go into a hospital room and [say], \u2018We treat our daughter\u2019s Rett syndrome with cannabis,\u2019 and they\u2019re like, \u2018There\u2019s no treatment for Rett syndrome, have you read the 1979 article that states that?\u2019 We\u2019re like, \u2018Yeah, it\u2019s 2017. Stop trying to kill our kid.\u2019\u201d<\/p>\n Bazin, the research nurse who runs clinical trials for potential Rett syndrome treatments, says that doctors generally hesitate to deviate from the federal guidelines around cannabis, which can make them hesitant to recommend or even read up on the potential benefits of pediatric cannabis.<\/p>\n \u201cFor the most part, physicians tend to really follow the rules and regulations, because they have to,\u201d she said. \u201cI chalk it up to they\u2019re scared of what they don\u2019t know. I don\u2019t know any neurologist who will prescribe it.\u201d<\/p>\n Since Donovan found herself hitting a wall with many of the healthcare professionals she interacted with, she turned elsewhere to find information on how to use cannabis to alleviate some of her daughter\u2019s symptoms. In her search for information, she eventually found herself enmeshed in Facebook communities run by fellow parents of children with neurodevelopmental disorders.<\/p>\n One of those communities Donovan turned to, Whole Plant Access for Autism or WPA4A, was founded by mothers Rhonda Moeller and Jenni Mai, who themselves met on Facebook. Moeller and Mai both started giving cannabis to their children on the\u00a0autism spectrum<\/a>\u00a0in lieu of more conventional options.<\/p>\n Mai, who hails from the Midwest, turned to cannabis to treat her 23-year-old son\u2019s \u201cextreme behaviors,\u201d including aggression and \u201cself-injury,\u201d which she felt were only exacerbated by pharmaceuticals. Her family relocated to California to begin the process of using cannabis as medicine.<\/p>\n Moeller\u2019s daughter was in kindergarten when she began to display aggressive behavior that pushed Moeller to seek out a medical marijuana recommendation in an effort to avoid \u201cthe pharmaceutical route.\u201d<\/p>\n Both women were blown away by the changes cannabis seemed to enact in their children\u2019s behavior, and were inspired to build a\u00a0local community on Facebook<\/a>\u00a0to share information about dosage, sourcing and other tips between SoCal parents of children with autism.<\/p>\n \u201cWe realized we were a good resource for families, and there wasn\u2019t really another group out there that was doing what we were doing, so we opened it up to everybody,\u201d Moeller told Cannabis Now.<\/p>\n \u201cWe do polls, surveys, collect our own data, see what everyone\u2019s using, how it\u2019s working, is it effective,\u201d Moeller said. \u201cThen we generate graphs and tables and we give those back to the families\u2026 information about what a lot of families in the group are doing, and we let them do with that what they want. A lot of this is trial and error, figuring it out for yourself and for your kid.\u201d<\/p>\n Soon, the group was inundated with requests from parents from across the state of California, then across the country and finally around the world. \u201cEverybody wants our help,\u201d Mai said. \u201cI think we have members in 78 different countries.\u201d WPA4A now has more than 15,000 members total, most of them parents of children with autism, and WPA4A has expanded into a\u00a0non-profit<\/a>.<\/p>\n \u201cAs we got bigger and bigger, we realized we needed to do more for these families\u2026 we wanted to be able to fundraise and get donations and pass it along to people that needed it,\u201d Mai said. \u201cAnd the best way we could do that was through the non-profit route.\u201d<\/p>\n Moeller and Mai also run webinars, present their findings at conferences and share data with interested physicians, researchers and patient\u2019s groups.<\/p>\n And luckily, though it\u2019s not the prevailing attitude, there is interest in cannabis\u2019s medicinal qualities from those in the realm of research \u2014 like Bazin. She said the FDA approval of\u00a0Epidiolex<\/a>\u00a0gives her hope for more research on the cannabis plant, and said that she\u2019s already noticed a distinct uptick in general interest.<\/p>\n When she first began working with patients with neurodevelopmental disorders, she heard \u201ca couple\u201d of their parents mention\u00a0CBD<\/a>, but now that rate has skyrocketed. \u201cIn the last year and a half, I\u2019ve heard it at like 80% of visits. The parent brings up either CBD specifically or medical marijuana, and they\u2019re saying either they\u2019ve tried it, they want to try it, they plan to try it, \u2018How do I get it?\u2019\u201d\u00a0<\/p>\n Donovan, for her part, is still using cannabis in conjunction with dietary adjustments and other lifestyle changes to help her daughter live her best possible life. She\u2019s also founded her own line of natural topical treatments,\u00a0ANSHI<\/a>. While the products don\u2019t include cannabis, she says it\u2019s a path she may not have pursued without cannabis, which she said was the first natural treatment she tried.<\/p>\n And pending Raegan\u2019s continual improvement, Donovan plans to have her enter first grade in the fall.<\/p>\n \u201cI got a diagnosis when my kid was a year and a half [old],\u201d Donovan says. \u201cThey told me she was never going to do all of these things and good luck with everything. I left that room thinking, well, if cannabis doesn\u2019t work, I\u2019m gonna take her to the Amazon, because the Amazon has tons of benefits that we don\u2019t have in the West. I was never going to give up on my kid that easy. And I never will.\u201d<\/p>\n TELL US<\/strong>, do you know anyone who uses cannabis to treat a pediatric health issue?<\/p>\n The post How One Canna-Mom Treats Her Daughter\u2019s Rett Syndrome With Cannabis<\/a> appeared first on Cannabis Now<\/a>.<\/p>\n
When Janelle Noble Donovan\u2019s daughter Raegan was diagnosed with Rett syndrome, a rare neurological disorder, and began suffering from seizures caused by an unrelated mass on her brain, she knew right away that she wanted to try to treat her child with cannabis. The San Diego resident\u2019s determination was bolsteredContinue Reading<\/a><\/span><\/p>\n","protected":false},"author":137,"featured_media":34756,"comment_status":"false","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[9768,9769,50,3237,9770,3356,53,9771,9772],"tags":[],"_links":{"self":[{"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/posts\/34755"}],"collection":[{"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/users\/137"}],"replies":[{"embeddable":true,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/comments?post=34755"}],"version-history":[{"count":1,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/posts\/34755\/revisions"}],"predecessor-version":[{"id":34757,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/posts\/34755\/revisions\/34757"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/media\/34756"}],"wp:attachment":[{"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/media?parent=34755"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/categories?post=34755"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cannabiscultivatornews.com\/home\/index.php\/wp-json\/wp\/v2\/tags?post=34755"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n![\"\"](\"https:\/\/cannabiscultivatornews.com\/home\/wp-content\/uploads\/2019\/04\/Janelle-Noble-Donovan-1.jpg\")
Dismissive Doctors & The Lack of Federal Research on Cannabis<\/h4>\n
Online Groups Connect Canna-Families to Research \u2014 and Each Other<\/h4>\n
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\nRead More: How One Canna-Mom Treats Her Daughter\u2019s Rett Syndrome With Cannabis<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"