Does He Still Have It?

Today marks the one-year anniversary of our son Edgar’s last seizure; therefore tomorrow is the one-year anniversary of his being seizure-free.

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Cause for celebration?  Absolutely.  Cause for concern?  Always.

To coincide with this milestone, Edgar’s medication regimen is on the descent.  Where he was on five separate medications for his epilepsy last year at this time, he is now only on one–and a reduced dose at that.  The goal is that as long as he remains seizure-free, by this time next year he should also be medication-free.

More on that in roughly 365 days.

For now, the question on my mind is the one that others have asked me and that I have thought long and hard about how to best answer:

If the seizures have stopped, does Edgar still have epilepsy?

The short answer to that is yes.  He is still under a neurologist’s care and guidance; therefore his neurological condition persists.  It will be his doctor who ultimately makes the official call when and if we arrive at that point.

As Edgar’s mother, my answer is a bit more convoluted and not remotely rooted in science.

It is my contention that as long as he takes medicine, he has epilepsy.  As long as I wake up every morning and go to bed every night thinking about whether or not he will have a seizure, he has epilepsy.  As long as every time I hear the wail of an ambulance siren and Edgar is not with me and my heart stops as I wait for my phone to ring, he has epilepsy. As long as every time the front office buzzes my classroom in the middle of the day and I assume it must be a message about my son, he has epilepsy.

And yet none of this is about me.

It is all about Edgar.  And when he is ready, willing, and able, I have no doubt he will weigh in on this–how he sees his condition, if he sees a condition; what worries him and what doesn’t.

Today he has epilepsy, and he’ll have it tomorrow, too.  But he hasn’t had a seizure in a year.

No one around here is exhaling just yet, least of all my son.  But we’re celebrating and vociferously marking this milestone.

He may still have epilepsy, but he also has this moment.

And really, if you think about it, this moment is all any of us have.

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5 thoughts on “Does He Still Have It?

  1. Yes, it is a cause for celebration if your child is seizure free. I strongly agree! I have lost 2 sons because of a rare genetic disorder called methyl malonic acidemia which presents itself through countless seizures. I understand the stress and the fear every time a child has seizures. It is a relief and a milestone whenever a child is seizure free, even just for a day. I am happy for you and especially your son. May he be blessed w/ good health and a seizure free life. I salute you as a parent for being strong and supportive of your child. Take care!

  2. Does one who had cancer and is now “cancer free” still have it?
    Does one who had high blood pressure but got it under control with or without meds, still have it.
    We have doctors who check on people who have exhibited signs of concern. Those signs can be active, dormant, or gone, but the affect of the sign lingers, and when the body exhibits signs of changes, advice and attention asap, and thereafter with regularity, responds to a warning upon which we are fortunate to act.
    Peace,

  3. Definite cause for celebration!
    I am nearly three years seizure free and have been off medication for two years and only had one seizure before being diagnosed, yet my neurologist still insists I have epilepsy. I’m grateful for every day that passes without a seizure.

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