For families starting out
What we'd do differently
Please read first. We are not doctors, and nothing here is advice of any kind, medical or otherwise. It is only what we, one family, wish we had known and done sooner. Every case of epilepsy is different. Please make every decision with your own qualified medical professionals.
For many people with epilepsy, medication controls the seizures, and it can eventually be weaned. Everything below assumes you are past that point: that roughly three medications have been tried and have either failed to control the seizures or carried side effects that outweighed any benefit, or that the seizures returned after a successful weaning. That is the hard place our own experience comes from, so that is where this starts.
If we could go back to the beginning, in this order of priority, we would:
- Write everything down, with dates. After six or seven years, you cannot hold it all in your head. Record the medications tried and their outcomes, the tests done and their results, every other attempt to control the seizures and how it went, and monthly seizure trends (daily is too much to sustain). That record becomes one of your most useful tools.
- Change one thing at a time. Keep each attempt to a controlled stretch where only a single variable changes. In our worst moments we changed several things at once, out of panic or desperation, and then had no way to know what had helped or hurt.
- Test and keep testing. Pursue biological markers: urine, blood, spinal fluid, genetics, and more as fully as they can be tested. It's expensive, so we would start with what is most probable and work outward, and we would keep going even when a doctor expects a test to find nothing. At least then you know, one way or the other.
- Look beyond medication. Explore non-medication, holistic, and other non-medical approaches, again, alongside your medical team.
And then, because it matters more than anything else on this list, we will say it twice: once you're past the point mentioned above, keep a written record. Every attempt, its date, and its outcome. It is the thing we most wish we had done from day one.