After battling seizures for over 10 years now, I definitely have a love-hate relationship with AEDs (antiepileptic drugs). Mira has tried so many over the years, that it all has just become a wash with what medication has what supposed mechanism of action or which one has the least side effects. One thing is for sure, no AED, by itself or in combination with any other AED, has ever stopped Mira's seizures. My love for the potential for medication is that they actually do help some children out there that are battling epilepsy. They may not work for Mira, but at east they are helping other kids.
My hate with AEDs is the method in which they are developed, run through clinical trials, marketed, and ultimately, used on children, often with little or no clinical research in regards to efficacy or safety. The pharmaceutical industry is consistently misguided in their efforts, often capitalizing on suffering patients and families like ours, all in the sake of profit. I won't digress into the latest news on OxyContin, nor again list the frightening side effects of Lyrica, Lamictal, or any of the other 15+ medications Mira has tried (or is currently taking) to help with her seizures. Most pharmaceuticals have a 'proposed' mechanism of action, but the fact that they clearly state in their prescribing information pamphlets that 'the method in which (insert medication name here) works has not been fully elucidated and is suggested to work in the following manner', is truly frightening. Not even the manufacturer, researcher, developer, nor the marketer knows how a particular AED actually works, they just assume and so long as it is documented that it is unproven, that is enough in the eyes of the FDA. It's all a guessing game, often with efficacy rates for seizure control only slightly better than a placebo. Pharmaceuticals are forced through clinical trials with this same approach: 'Well, it's slightly better than you taking nothing and it actually can create horrific side effects that are much worse than you taking nothing in the first place, but well, it will be fine, because we aren't really sure how it works anyway, so let's just see what happens. If something bad does actually happen, we will be held blameless, because well, we told you so right here in writing'.
All of this comes to light several times every, single month, whenever we have to get one of Mira's prescriptions filled. Today, in fact, we ran into a dilemma. Mira has been taking Vimpat for the past 18 months or so, which has had a negligible effect on her seizures and little effect on her irritable disposition. We continue to question why she is on it and in fact, it will be a topic of discussion in our neurology appointment coming up in a few weeks. The dilemma was that we only have 2 pills remaining and didn't realize she didn't have any remaining refills. The neurology clinic is obviously closed on the weekend and refuses to accept calls after hours. The only choice you have is to page the on-call neurologist through the main line and have them contact you, should there be a critical issue you need to deal with.
Is getting a prescription refill a critical issue? Normally no, since most pharmacies understand the importance of maintaining 'therapeutic' levels of medications in the system (especially AEDs) and can advance a few days worth to get you by until you can contact the prescribing physician. Unfortunately, you cannot do this with Vimpat, since it is a controlled substance. That's right. Straight out of the DEA's endless list of controlled substances is my daughter's Vimpat. Along side of your friendly neighborhood narcotics PCP, cocaine, LSD, and heroin, are the commonly marketed AEDs tranxene, clonazepam, clorazepate, diazepam, lorazepam, phenobarbital, and pregabalin.
Needless to say, the pharmacist cannot legally advance even one pill of a DEA controlled substance, thus we had no choice but to call the hospital nurse line, who in turn called the on-call neurology nurse, who in turn contacted the on-call neurologist, who ultimately called in a prescription to our pharmacy, just so we could get a few days worth of Vimpat until Monday.
Why is my 10 year old child so easily prescribed a DEA controlled substance, with a questionable mechanism of action and nearly zero efficacy in terms of seizure control? Welcome to the American pharmaceutical industry. Why would giving her an oil extract from a plant put me in jail and have my children and family taken away from me? You can thank Senator Mary Pilcher-Cook for reinforcing that hypocritical, greed-infused logic here in the State of Kansas.