Seizure medications
Weighing the risks of seizure medications against their benefits
Often when I write I think about current issues that we face raising Quincy. It occurred to me last night that we have been raising Quincy for almost 14 years and that much of what we know today is based on our experiences over the past 14 years. On many issues we still rely on our experience from long ago to help guide our current decisions.
One of our biggest challenges over the years is our constant, frustrating struggle with seizure medication. Seizure disorders are fickle bitch to manage. When Quincy was first diagnosed we expected our doctors to prescribe the magic medication to fix the problem. You learn very quickly that there isn’t a simple solution. Seizures look different from individual to individual. They manifest themselves differently, they occur in different lobes of the brain, they change as the child grows and matures. What worked yesterday may not work today and what works tomorrow may not work next year.
Seizure medication is problematic. Some are sedatives and cause drowsiness…in Quincy’s case drowsiness tends to be a trigger for seizures so these kind of meds actually cause her more harm than good. Some have potentially serious side effects on the child’s internal organs, like their kidneys and liver, so even if they are effective you really don’t want to use them for too long. Some can effect a child’s equilibrium, some can disrupt sleep, some can affect their appetite…the list is long and scary. Parents have to constantly weight the benefit of the drug against its potential side effects.
Even after you’ve found a drug or drug combination that controls seizures and doesn’t have any serious side effects on your child, you have to deal with the fact that often seizure meds stop working. This is true. What worked well for a year or two or six may just slowly lose it’s effectiveness. We refer to it as “breaking through”. The seizures find a way to break through the meds and then you have to start again.
There is a little good news…over the past 14 years there have been some new seizure medications brought to the market that have much fewer side effects and get at seizures in new ways. We have had pretty decent success with some of these new medications (Keppra, for example) and it has allowed us to avoid some of the scarier options. However, part of Quincy’s med cocktail still contains Depakote and we hope we can remove it someday. But, so far her control is pretty good and so we are willing to leave Depakote on-board for the gain of fairly decent seizure control.
If you are caught up in this very confusing world of seizure medications take heart, you are not alone. I have learned a great deal from other families who are in the same tough position we are in…what works on one child probably won’t work on yours, but just knowing that the kinds of struggles and decisions we face are the same for others brings comfort. Keep doing your homework and talking to your doctors…we are always finding new things to try and if it’s better for Quincy then it’s worth the effort on our part to make changes.
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National Vaccine Information Center (NVIC)
