{"id":3693,"date":"2013-12-09T00:46:03","date_gmt":"2013-12-08T13:46:03","guid":{"rendered":"https:\/\/blogs.rch.org.au\/news\/?p=3693"},"modified":"2015-04-29T12:07:27","modified_gmt":"2015-04-29T02:07:27","slug":"living-with-epilepsy","status":"publish","type":"post","link":"https:\/\/blogs.rch.org.au\/news\/living-with-epilepsy\/","title":{"rendered":"Living with epilepsy"},"content":{"rendered":"

\"Bailey\"<\/a>At just four-years-old Bailey contracted encephalitis<\/a>. He was suddenly unable to talk, walk, sit or eat properly. Eventually, with years of treatment and multiple therapies, he began to improve and was almost back to being a healthy little boy.<\/p>\n

Then one day, when Bailey was nine-years-old, he had a seizure, and once again for him and his family, life was turned upside down when he was diagnosed with epilepsy<\/a>.<\/p>\n

Since then Bailey has lived with epileptic seizures, which he endures multiple times per day. For as long as he can remember this has been his life, with no break, no \u2018days off\u2019, just constant seizures that are part of his everyday life.<\/p>\n

Despite his condition Bailey\u2019s outlook on life, and the way he chooses to live it, is nothing short of miraculous. He brings a beautiful positive energy and good humour to anything he does, despite his constant challenges.<\/p>\n

Bailey\u2019s mum Toni says he manages to make the most of every opportunity he has. \u201cFor the first four years of Bailey\u2019s life we had a perfectly healthy little boy, and then our world was turned upside down when we started having seizures. \u201cWe didn\u2019t know what Bailey\u2019s life would be like, and how much he\u2019d be able to enjoy it, but we tried to be optimistic,\u201d Toni said.<\/p>\n

\u201cNow he can go to school and he loves to play all kinds of sport and music as well as work on cars with his dad, every single day we\u2019re so proud of him.\u201d<\/p>\n

In Bailey\u2019s words, having epilepsy is \u2018horrible\u2019. \u201cSometimes it\u2019s hard to make friends because people don\u2019t always understand, but even with the challenges of epilepsy, there\u2019s still so much I love about life, like going to school and playing T-Ball and wheelchair basketball,” said Bailey.<\/p>\n

Bailey and Toni say the support they get from the team at the RCH, including Neurologist\u00a0Dr Simon Harvey<\/a>, peadiatrician Dr Lionel Lubitz<\/a> and Allied Health staff, as well as their local Bairnsdale doctor Dr David McConville is invaluable.<\/p>\n

\u201cBailey\u2019s medical and allied health team make everything just that little bit easier for us. For example, sometimes Bailey has so much fun in his Speech Therapy<\/a> with speech pathologist Bernadette O’Connor<\/a>, that it\u2019s hard to believe it\u2019s work for him,\u201d said Toni.<\/p>\n

Things turned around for Bailey and his family significantly this year when RCH neurologist Dr Simon Harvey\u00a0offered Bailey the opportunity to have Vagus Nerve Stimulation<\/a> (VNS), a procedure that stimulates the vagus nerve with electrical impulses. Dr Harvey has been caring for Bailey for approximately six years and has been trying new medications but Bailey\u2019s epilepsy continued to get worse over time.<\/p>\n

Dr Harvey explained that epilepsy that follows encephalitis in early childhood is usually severe and difficult to control.<\/p>\n

\u201cIn Bailey\u2019s case medications have only had a modest impact on seizures and brain surgery is not possible, due to the damage from the encephalitis affecting both sides of his brain.\u00a0VNS provides brain stimulation via the vagus nerve in the neck and in Bailey\u2019s case reduced the severity and impact of his epilepsy,\u201d Dr Harvey said.<\/p>\n

\u201cIt has been pleasing to see the significant benefits of VNS in Bailey, as his epilepsy was worsening and his quality of life was deteriorating.\u00a0 Most pleasing has been seeing Bailey get back to school this year, hearing about his theme park trip to the Gold Coast, and seeing his new \u2018bike\u2019 purchase,\u201d he said.<\/p>\n

Fortunately,\u00a0Bailey and his family\u2019s life changed remarkably after the VNS, which was performed at the RCH at the end of January 2013.<\/p>\n

Toni said as soon as it was turned on they saw amazing results. Bailey\u00a0was having 30 plus\u00a0drop seizures everyday and now he\u00a0generally has\u00a0two or three a day, which is a dramatic difference. \u201cWe can now make plans and follow through with them,\u201d Toni said.<\/p>\n

In addition to this great improvement in Bailey\u2019s health this year he has joined ChIPS (Chronic Illness Peer Support<\/a>) program at the RCH, and attends socials and camps in Melbourne. His highlight this year was the Starlight Wish the family received to travel to the Gold Coast and swim with the Dolphins! He is also passionate about wildlife conservation. \u201cI love animals and my dream is to meet my idol Bindi Irwin,\u201d he said.<\/p>\n

Bailey is thankful for the wonderful support from his mum and dad, his sister Mackenzie and his great friends at ChIPS.<\/p>\n

\u201cThey mean everything to me and their support is what allows me to be so positive and enjoy each day.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Bailey has lived with epilepsy since the age of nine, but his quality of life has improved significantly thanks to Vagus Nerve Stimulation.<\/p>\n","protected":false},"author":41,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[6],"tags":[],"class_list":["post-3693","post","type-post","status-publish","format-standard","hentry","category-in-the-news"],"acf":[],"_links":{"self":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3693","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/users\/41"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/comments?post=3693"}],"version-history":[{"count":9,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3693\/revisions"}],"predecessor-version":[{"id":4875,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/posts\/3693\/revisions\/4875"}],"wp:attachment":[{"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/media?parent=3693"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/categories?post=3693"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.rch.org.au\/news\/wp-json\/wp\/v2\/tags?post=3693"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}