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                    <title><![CDATA[Checkup Newsroom]]></title>
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                    <pubDate>Tue, 10 Nov 2020 22:40:23 +0100</pubDate>
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                        <title>Epilepsy Patient Three Years Seizure Free Thanks to Groundbreaking Research</title>
                        <link>https://www.checkupnewsroom.com/epilepsy-patient-three-years-seizure-free-thanks-to-groundbreaking-research/</link>
                        <guid>https://www.checkupnewsroom.com/epilepsy-patient-three-years-seizure-free-thanks-to-groundbreaking-research/</guid><pp:caseid>421529</pp:caseid><pp:subtitle>NBC 5 Shares Miller&#039;s Story in Honor of Epilepsy Awareness Month</pp:subtitle><description><![CDATA[<p><span><span><span><span>NBC 5 helped us kick off Epilepsy Awareness Month last night with a <a href="https://www.nbcdfw.com/news/health/groundbreaking-research-at-cook-childrens-helps-children-living-with-epilepsy/2470762/">feature story</a> about a Cook Children&rsquo;s patient who&rsquo;s now three years seizure free thanks to a groundbreaking clinical trial.</span></span></span></span></p><p><span><span><span><span>Miller Queen suffers from a severe and debilitating form of epilepsy known as Dravet syndrome, but you&rsquo;d never know it by looking at him. At 7 years old, Miller is doing things that never seemed possible like playing soccer and going to school.</span></span></span></span></p><p><span><span><span><span><img alt="" src="https://content.presspage.com/uploads/1065/500_millerqueen2.jpg?x=1604336534925" style="border-width: 1px; border-style: solid; margin: 5px; float: left; width: 350px; height: 467px;" />&ldquo;Daily life when you don&rsquo;t have seizure control is just a rollercoaster,&rdquo; his mother Chelsea Queen told NBC 5. &ldquo;You&rsquo;re kind of always on edge waiting on the next seizure to happen.&rdquo;</span></span></span></span></p><p><span><span><span><span><span>Starting at 6 months old, Miller was having as many as 10 seizures a day. Every treatment he tried failed and his parents were afraid to take their eyes off of him for even a moment.</span></span></span></span></span></p><p><span><span><span><span><span>Then, they found Cook Children&rsquo;s and M. Scott Perry, M.D.,</span></span></span> &nbsp;<span><span><span>an epileptologist and medical director of</span></span></span>&nbsp;<span><span><a href="https://www.cookchildrens.org/neurology/specialty-programs/Pages/Neurology.aspx?utm_source=CheckupNewsroom&utm_medium=InternalReferral&utm_campaign=CheckupNewsroom&utm_term=&utm_content=txtlink">Neurology</a>&nbsp;<span><span><span><span><span>and the</span></span></span></span></span>&nbsp;<a href="https://www.cookchildrens.org/neurology/clinics/Pages/Genetic-Epilepsy-Clinic.aspx?utm_source=CheckupNewsroom&utm_medium=InternalReferral&utm_campaign=CheckupNewsroom&utm_term=&utm_content=txtlink">Genetic Epilepsy Clinic</a>&nbsp;<span><span><span><span><span>at Cook Children's</span></span></span></span>.</span> </span></span></span></span></p><p><span><span><span><span>&ldquo;When you deal with epilepsies that are so difficult to control, it certainly becomes difficult not to feel that there&rsquo;s not an answer,&rdquo; Dr. Perry said.</span></span></span></span></p><p><span><span><span><span>Miller was enrolled in a clinical trial for the drug fenfluramine, which was once used as a popular appetite suppressant. Only a handful of hospitals nationwide were involved in the trial and Cook Children&rsquo;s happened to be the only one in Texas. The drug completely stopped Miller&rsquo;s seizures.</span></span></span></span></p><p><span><span><span><span>&ldquo;The treatment completely changed his life,&rdquo; Queen said in the interview with NBC 5. &ldquo;He&rsquo;s always been such a happy kid but now he&rsquo;s able to experience life to the fullest.&rdquo;</span></span></span></span></p><p><span><span><span><span>Overall, the clinical trial showed fenfluramine reduced seizures on average by about 70%. The research helped lead to approval from the Federal Drug Administration, opening up fenfluramine as a treatment for everyone with Dravet syndrome.</span></span></span></span></p><p><span><span><span><span>&ldquo;The next medication to try and make you seizure-free is probably 2%, but you know what, you might be that 2% so that&rsquo;s why we keep looking for it,&rdquo; Perry said.</span></span></span></span></p><p><span><span><span><span>For Miller&rsquo;s parents, they know this to be true.</span></span></span></span></p><p><span><span><span><span>Matt Queen, Miller&rsquo;s father told NBC 5 &ldquo;If something doesn&rsquo;t work, don&rsquo;t lose hope.&rdquo;</span></span></span></span></p><div class="text_companyprofile" style="padding: 8px; margin-bottom: 30px; background-color: rgb(226, 243, 247);"><p><strong><span>Learn More about&nbsp;</span></strong><b>Cook Children&rsquo;s Epilepsy Program</b></p><p>Cook Children's Comprehensive Epilepsy Program is one of the leading and most advanced pediatric epilepsy programs in the country. The National Association of Epilepsy Centers recognizes&nbsp;Cook Children's&nbsp;Comprehensive Epilepsy Program as a&nbsp;<a href="https://www.naec-epilepsy.org/about-epilepsy-centers/what-is-an-epilepsy-center/">Level 4 Pediatric Epilepsy Center</a>. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy.</p><p>Our program coordinates the skills of a highly specialized&nbsp;team of experts&nbsp;across neurosciences and Cook Children's Health Care System. This team is made up of epileptologists, neurologists, neurosurgeons, neuropsychologists, nurse specialists, EEG technologists, nutritionists, nurse educators,&nbsp;social workers&nbsp;and&nbsp;Child Life&nbsp;specialists, all working together to ensure children with epilepsy receive the most accurate diagnosis and advanced treatment available.</p><p>More than 13,000 infants and children with seizures are treated at Cook Children&rsquo;s each year. Annually, we perform more than 6,000&nbsp;<a href="http://kidshealth.org/PageManager.jsp?lic=403&article_set=25138&ps=104&cat_id=128&rss=25138">EEGs</a>&nbsp;and 40-50 epilepsy surgeries, making Cook Children's Comprehensive Epilepsy Program one of the busiest pediatric epilepsy centers in the nation. And with specialized diagnostic tools, like our&nbsp;<a href="https://cookchildrens.org/neurology/advanced-technology/Pages/magnetoencephalography.aspx">MEG</a>, the newest generation of advanced imaging technology is now available to even our youngest patients.</p><p>For more information, visit our&nbsp;<a href="https://cookchildrens.org/neurology/clinics/Pages/Comprehensive-Epilepsy-Program.aspx">website</a>.</p></div>]]></description><category><![CDATA[Main,News,epilepsy,NBC5,fenfluramine,seizure,miller,queen,Dravet,Syndrome,FDA,neurology,Awareness,ourpeople,Our People]]></category>
            <pubDate>Mon, 02 Nov 2020 11:12:49 -0600</pubDate>
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                <pp:imageOriginal>https://content.presspage.com/uploads/1065/millerqueen.png?10000</pp:imageOriginal><pp:imageTitle><![CDATA[Miller Queen]]></pp:imageTitle><pp:imageDescription><![CDATA[Dravet syndrome patient seizure free three years on fenfluramine clinical trial]]></pp:imageDescription></item></channel>
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