{"id":3504,"date":"2014-10-30T12:07:09","date_gmt":"2014-10-30T12:07:09","guid":{"rendered":"http:\/\/www.420magazine.com\/?p=2646"},"modified":"2014-10-30T12:07:09","modified_gmt":"2014-10-30T12:07:09","slug":"saving-sydney-a-mothers-fight-for-medical-cannabis","status":"publish","type":"post","link":"https:\/\/cannitrol.com\/blog\/saving-sydney-a-mothers-fight-for-medical-cannabis\/","title":{"rendered":"Saving Sydney: A Mother\u2019s Fight For Medical Cannabis"},"content":{"rendered":"<div id=\"wp_fb_like_button\" style=\"margin:5px 0 5px 5px;float:right;height:100px;\"><script src=\"http:\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\"><\/script><fb:like href=\"https:\/\/cannitrol.com\/blog\/saving-sydney-a-mothers-fight-for-medical-cannabis\/\" send=\"true\" layout=\"standard\" width=\"450\" show_faces=\"false\" font=\"arial\" action=\"like\" colorscheme=\"light\"><\/fb:like><\/div><p>Julie Michaels remembers the day her daughter lost her smile. At 6 months of age, Julie had noticed her daughter\u2019s skills were regressing, but the lack of a smile was the most noticeable of all.\u201cIt was probably the hardest thing as a parent, just for her to be expressionless \u2013 no joy there at all,\u201d she said of her daughter Sydney Michaels. \u201cIt was really hard.\u201d<\/p>\n<p>Dravet Syndrome &#8212; a rare and catastrophic form of intractable epilepsy that begins in infancy &#8212; was the culprit behind the latest development. \u201cIf she&#8217;s seizing a lot, we see regressions,\u201d Michaels, of Connellsville, said. \u201cWe&#8217;ve had at least three, maybe four regressions since this whole thing started, where she has to go through a time of regaining skills that have been lost.\u201d<\/p>\n<p><b>New Year\u2019s Eve 2009<\/b><br \/>\nSydney Michaels suffered her first, of what would become thousands of seizures, when she was three days shy of turning 3 months old. \u201cI had her in the bath at the time, and all of a sudden I noticed her arms and her legs were shaking,\u201d Julie said. \u201cAnd at that time, I thought maybe she&#8217;s just cold in the bath.\u201d Three days later, on New Year\u2019s Eve, a second seizure took hold of Sydney. She was blue, convulsive,\u201d Julie said. \u201cWe literally thought she was dying. It was pretty terrifying. When 911 finally got here she had been seizing for well over 20 minutes.\u201d Later, Julie would learn that bathing Sydney actually triggered the seizures. \u201cI swear the girl had no more than 20 baths that first year of life once we realized that every time we put her in the bath she had a seizure,\u201d she said.<\/p>\n<p><b>In limbo<\/b><br \/>\nOther triggers, like heat and light, came along later after Sydney\u2019s Dravet diagnosis at 11 months of age. But it was a grueling seven months before Julie and her husband Paul, were given any sort of clarity. They kept trying different drugs with her and nothing was helping,\u201d Julie said. \u201cShe got to the point where she was on three different drugs at six months old.\u201d<\/p>\n<p>Throughout the seven-month period in limbo, where multiple drugs were introduced, and multiple trips to a variety of doctors were made, Julie and Paul still had hope that Sydney would one day grow out of the seizures, especially because Paul suffered from epilepsy in childhood. \u201cWe were always given that hope that childhood epilepsy is common, and a lot of children tend to grow out of seizures,\u201d Julie said. \u201cThere was one doctor one time who said to us, \u2018your child&#8217;s seizures are way too severe,\u2019 he said \u2018she&#8217;s not growing out of this.\u2019 We both left there kind of shell-shocked, because everyone else is painting this happy picture, like, \u2018oh, this is temporary, and it&#8217;s going to go away.\u2019 Suddenly there was this doctor who said no, this isn&#8217;t going away.\u201d<\/p>\n<p><b>A special diet<\/b><br \/>\nFour years later, daily life is still a struggle for Sydney, where she has to avoid light by wearing an eye patch on one eye, rapid temperature changes, water, and normal foods that any other child enjoys.On a hot summer morning in July, Sydney was patiently sitting in the darkened, cool living room of her home, as her mother administered her her special, ketogenic diet through a feeding tube.<\/p>\n<p>\u201cShe&#8217;s been on the diet since she was 10 months old,\u201d Julie said. \u201cI asked them (her doctors), what&#8217;s the likelihood of this diet helping her with this seizure control? They said they have never had a patient with Dravet Syndrome on this diet so we didn&#8217;t know. At least at Pittsburgh Childrens, Sydney was the pioneer down there, for being the first Dravet kid to be on the diet.\u201d The diet &#8212; a high-fat, adequate-protein, low-carbohydrate diet &#8212; has worked wonders for Sydney, although at times, she struggles to finish the meals set before her. \u201cSometimes, she can be patient,\u201d Julie said. \u201cBut a lot of times, mornings are really rough for her.\u201d Before the diet, she was having three to five Grand mal, or tonic-clonic seizures every week, and almost all of them required rescue drugs, Julie said. The diet took her from three to five tonic-clonics a week to one every couple of months.<\/p>\n<p><b>Trial and error<\/b><br \/>\nAs time went on, Julie and her husband Paul, learned more and more about the rare disease that had taken over their daughter\u2019s life. They learned a great deal through trial and error, as well as from other parents in support groups they joined. \u201cThere seems like there&#8217;s no standard one path,\u201d Julie said. \u201cWhat works for one Dravet kid, doesn&#8217;t work for the next Dravet kid. You constantly feel like your kid is a lab rat or a guinea pig &#8212; \u2018let&#8217;s toss this at them and see what happens.\u2019\u201d Dr. Paul Means of Connellsville, Sydney\u2019s primary care physician, said he feels as if medicine has failed her.<\/p>\n<p>\u201cI hate to say medicine is failing them (Dravet children), but, we kind of are,\u201d Means said. \u201cWe\u2019re not really controlling her (Sydney\u2019s) seizures they way they should be controlled. We\u2019re using medication that could have potential serious side effects. It\u2019s the best we have right now. But, if there may be something better, I think we should look into it.\u201d And that\u2019s where medical cannabis comes in.<\/p>\n<p><b>Regaining her smile<\/b><br \/>\nWhile Julie can look back on that day a few years ago when Sydney stopped smiling, she can also remember the day her daughter got her smile back. \u201cThere was a good year and a half when all of that was gone. We weren\u2019t sure if we were going to get it back again. But somewhere around 2 years of age, the smile came back. And she started to develop a personality again,\u201d Julie said. She\u2019s hopeful to see even more improvement in her daughter\u2019s development with the help of medical marijuana.<\/p>\n<p>\u201cI can&#8217;t even imagine how much it would help her quite honestly (developmentally),\u201d Julie said. \u201cA lot of the parents in Colorado who are using this with their children have found that their children&#8217;s triggers have been improved. The heat, and the lights, temperatures of water, no longer bothers their kids. They can go out and play, and act fairly normal.\u201d<\/p>\n<p>The medical marijuana being used in Colorado has strong anti-inflammatory agents, a high number of antioxidants, as well as weak levels of tetrahydrocannabinol (THC), the psychoactive ingredient for getting high.\u201cWe hope she has the same outcome as some of these other children,\u201d Means said. \u201cThe reports from these parents have been pretty impressive. We wish we had more solid studies, but at this point, with medical marijuana being such a controversy, our officials are not letting us use it, or even let us trial it in any meaningful way to know. And I think that\u2019s the key &#8212; we\u2019ve got to get the approval to at least try it.\u201d<\/p>\n<p>Michaels has worked in concert with a group of other moms \u2013 moms whose children also suffer from epilepsy \u2014 for the past year, rallying to get Senate Bill 1182 passed in the Pennsylvania State Senate.Julie made several trips to Harrisburg with Sydney, imploring state Senators to hear their story. \u201cThere was no big lobbying in Harrisburg. There were none of the big guys behind this, there was no big money behind this,\u201d said Sen. Mike Folmer, primary sponsor for SB 1182. \u201cThese are just everyday folk who are fighting for their health, who wanted to have an opportunity to have one more arrow in their quiver to fight their disease that I believe they have the God-given right to do. These are amateur, but outstanding and effective lobbyists.\u201d Pittsburgh NORML and PhillyNORML &#8212; groups that have been pushing this issue for years &#8212; have never come this close.<\/p>\n<p>\u201cThey haven\u2019t gotten anywhere until this past year when the moms of these kids have stepped up and said \u2018hey look, this can help my child, this can save my child,\u2019\u201d Julie said. \u201cPeople are more willing to start looking at this when we\u2019re talking about saving children. Without the kids there, I don\u2019t think we\u2019d be even remotely close to where we are.\u201d Under the bill, which is titled the Compassionate Use of Medical Cannabis Act, a state resident who possesses an access card from the Health Department, would be able to use medical marijuana to treat his or her condition. A handful of drug delivery methods that do not involve smoking it would be permitted under the bill, including extracted oil, edible products, ointments and tinctures. The latest version of the bill no longer includes vaporization of cannabis as a method of treatment delivery, which is a major concern for Julie and her fellow moms. An oil is not going to help a seizing child, she said.<\/p>\n<p>\u201cIf they are having a status epileptic seizure, and their benzo drugs aren\u2019t working to pull them out of it, we could vaporize the THC with an oxygen mask, and that has shown to be very effective in stopping these status seizures,\u201d she said. \u201cYou can\u2019t give an oil or an edible to a seizing child. Plus, it\u2019s the fastest and the most accurate form of dosing to get it quickly into the body. If you\u2019re eating something orally, that takes 30 minutes or more to start getting into your system.\u201d Despite the amendments, when the bill passed last month by a vote of 43-7, Julie, and the other moms, celebrated. Although a major victory, it was only one of the three hurdles they needed to clear. The measure failed to make it to the floor of the state House this term. If it had, it would have gone to the governor\u2019s desk for his signature &#8212; the final hurdle.<\/p>\n<p><b>A new year<\/b><br \/>\nCome January 2015, the moms will need to begin their battle once again. But this time around, they\u2019re not starting from scratch. \u201cThe good thing is, I think it\u2019s going to go through the Senate very quickly this time, because we\u2019ve already kind of been there and done this,\u201d Julie Michaels said. \u201cThe language of the bill has been written \u2026we\u2019ve already had the hearings in the Senate, we\u2019ve had the amendments done in the Senate, we\u2019ve gone through all of those fights, so I think it\u2019s going to go very quickly through the Senate, which will hopefully give us a full solid year of pushing and fighting in the House.\u201d<\/p>\n<p>Julie said the House leadership has been resistant to running the bill. She has heard that the House wants to hold their own committee hearings. And the most difficult part of the whole process has been conveying a sense of urgency to the politicians. \u201cAny seizure could be her (Sydney\u2019s) last,\u201d Julie said. \u201cYou just never know. Any moment could be the last. We can\u2019t seem to share that sense of urgency enough.\u201d A fund has been established through PNC Bank to aid the Michaels family with medical expenses. Donations can be taken into any branch and deposited into the fund, which is called the Sydney Michaels Foundation.<\/p>\n<p><img src=\"http:\/\/www.420magazine.com\/gallery\/data\/1412\/medium\/Sydney_Michaels2.jpg\" alt=\"\" border=\"0\" \/><\/p>\n<p>News Moderator &#8211; The General @ <a href=\"http:\/\/www.420magazine.com\/\" target=\"_blank\">420 MAGAZINE \u00ae<\/a><br \/>\nSource: Heraldstandard.com<br \/>\nAuthor: Amanda Steen<br \/>\nContact: <a href=\"http:\/\/www.heraldstandard.com\/site\/about\/\" target=\"_blank\">Contact Us<\/a><br \/>\nWebsite: <a href=\"http:\/\/www.heraldstandard.com\/new_today\/saving-sydney-a-mother-s-fight-for-medical-cannabis\/article_66265400-7227-5b30-9c23-67a9a02aeaf2.html\" target=\"_blank\">Saving Sydney: A mother&#8217;s fight for medical cannabis &#8211; heraldstandard.com: New Today<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Julie Michaels remembers the day her daughter lost her smile. At 6 months of age, Julie had noticed her daughter\u2019s&#8230; <a href=\"http:\/\/www.420magazine.com\/2014\/10\/saving-sydney-mothers-fight-medical-cannabis\/\" class=\"read-more\">[Read More]<\/a> <\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1614,9,1,3],"tags":[4182],"_links":{"self":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts\/3504"}],"collection":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/comments?post=3504"}],"version-history":[{"count":0,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/posts\/3504\/revisions"}],"wp:attachment":[{"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/media?parent=3504"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/categories?post=3504"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/cannitrol.com\/blog\/wp-json\/wp\/v2\/tags?post=3504"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}