Thoughts on Living with Epilepsy: #1

Living with epilepsy is:

• Knowing that the first appropriately chosen anti-epileptic drug (AED) your child tries has about a 33-60% chance of working to eliminate seizures.  

• Knowing that for about 66% of children,the first or second appropriately chosen AED works to control (eliminate) seizures. 

• Knowing that after your child has failed his or her second appropriately chosen AED, that there's only about a 5 % chance of any AED working for him or her in the future.

• Knowing that that 5% chance of an AED working declines with each failed trial thereafter,

• Struggling through medication side-effects, knowing that because your child has failed two or more appropriately chosen anti-epileptic drugs that the new one he or she is trialing has less than a 5% chance of working.

• Knowing that many of these same medications that probably won't work have one or more FDA "Black Box Warnings"--indicating they might permanently harm or even kill your child

• Feeling pressured into trailing the dangerous, unlikely-to-work medications anyway, because to not do so would result in being considered a difficult, non-compliant, or even negligent parent.

• Knowing that if one of the dangerous medications actually did permanently harm or kill your child that the pharmaceutical company that manufactures it wouldn't bear any legal responsibility so long as you'd been informed of the medication's possible health or life threatening ill effects before the medication was given to your child.  

• Knowing that if your child was seriously injured or killed by medication, the guilt would rest solely on your shoulders.

• Knowing that that guilt would be a heavy burden to carry for the rest of your life.

• Feeling caught between a rock and a hard place, because there are no good choices.  Only bad and worse ones.  

• Realizing that conventional epilepsy treatment really is one carefully conducted experiment after another--because medical science knows so little.

• Realizing experimentation's the ONLY way doctors can figure out the puzzle of your child's epilepsy.  

• Realizing that your child is really and truly a lab rat--and there is nothing you can do about it. 

• Realizing that there's something insane about this whole situation.