It has now been 3 weeks since Alec was discharged from a 20 day admission at the mater childrens hospital. I am posting this short clip of Alec as it is clear that he has not improved and continues to suffer debilitating pain episodes multiple times a day . We still do not have a future spot with Alecs Specialists at the Mater Childrens and the only contact we have had is a brief phone call last Friday, to enquire about his progress. While Alec cried int he background for the entirety of the phone call, I informed the specialist that as they can hear, Alec continues to suffer pain, has resumed self harming, as well as not sleeping, losing weight and lost his appetite. Despite expressing my concerns, her reply was that she would touch base at the end of next week to see how he is. That was 8 days ago and Alec is not improving. So while Alec is on zero behavioural medication, is being treated only by Behavioural Specialists, we are becoming increasingly distressed at the decline of our precious little boy. The medication they have Alec taking, Topiramate, has seen him suffer significant side effects and as he is non verbal and incapable of telling us any other effects he maybe having, we are very concerned about long term damage. We cannot understand why his medical team of specialists have virtually abandoned this little boy, denying him the opportunity to improve his quality of life . We are now seeking to go over the NSW border, like we have heard many Queensland families have done, to access quality medical treatment for our children. Time is of the essence for Alec. #medicalassistanceforalec
Posted on: Sat, 08 Nov 2014 00:23:29 +0000
Trending Topics
Recently Viewed Topics
© 2015