I must be a naïve soul! It has just, and I mean literally dawned on me that everything is driven by money. I realise that the way the world moves is dependent on the dollar but not for one second did I fully comprehend that this is also true for our health care sector. So I stopped to think while I was cooking dinner… More than once our neurologists have pushed the newest epilepsy treatment. Our most recent addition was Vimpat. I clearly remember now our neurologist saying “The reps are not reporting significant side effects” Just ponder that for a minute… What else do the pharma reps say? Are they educated folk, with degrees in Pharmacology? Do drug reps have neurology degrees? Then I cast my mind further back, to when Jem was ten. His neurologist suggested we travel to Melbourne to undergo testing to see if he was a surgical candidate. It was during this testing he came under the care of one of our Countries’ most renowned epileptologists. We travelled to Melbourne, and stayed in the monitoring unit at the RCH for a full week. We went back for another week some months after. During these two weeks, Jem underwent numerous tests. In one week he had three general anaesthetics so that these tests could be performed. He had MRI’s, Interictal and Ictal SPECT scans performed. He attempted to have neuropsychologist assessment performed. He had his medications stopped cold turkey. After all of these tests were performed, and the team met to discuss his case for surgery it was agreed that he was not a surgical candidate. Too many foci for seizures, in every lobe of his brain. But probably the most disappointing thing was his Epileptologist said to us after all of this, “In my experience, Post encephalitis patients generally are not good surgical candidates” So why exactly did they put my son through all of that? All of those GA’s the isotope for SPECTS?! So then the Epi suggested the Vagal Nerve Stimulator, in a patient that is non-verbal to explain side effects he might experience. A patient that already has swallow issues. VNS with a success rate of 30%, being offered for a family that is desperate. Why did our ex neurologist push Sabril, when Jem is non-compliant for eye testing and refractory to boot! Why did his specialists push for him to be taken off Phenobarbital so quickly “Because it is not good for children to be on because it is addictive” but then add two other equally as bad meds? Why did they insist on keeping him on Lamictal even though he had to take Nitrazepam in order to sleep? Why is our current neurologist seemingly so uneducated about cannabis? I really need to smarten up! No more!!
Posted on: Sat, 23 Aug 2014 09:19:24 +0000
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