E is for Epilepsy

I’ve been starting a lot of posts lately about Jake’s health with the phrase, “I’m not exactly sure how to say this…”.  This is another one of those.

If you have been following along lately, you know that Jake had a medium sized seizure in October, which led to the revelation of lots more small ones, several doctor visits, an MRI and an EEG.  The MRI came out clear and last week, we got an urgent call that the EEG results had been read and that we needed to get up to Sacramento to see the neurologist.

As a cancer survivor, Greg and I have strong reactions to that kind of a call.  I am eternally thankful for the company that Greg works for being cool with him saying, “Gotta go!” and leaving to come home and drive up with us.

To leave you all without the suspense we dealt with, I’ll cut to the chase.  Jacob has been officially diagnosed with epilepsy.

I am not going to assume that any of you really know what epilepsy is exactly and since I’m not a doctor, I won’t even try to explain it like a medical textbook.  The best I can do is to say that our brains fire electrical currents and sometimes the receiving end of those currents, for some reason we don’t understand, get closed off.  So, that electrical impulse has nowhere to go and bounces off the receiver.   That missed connection is epilepsy and the manifestation of epilepsy is a seizure.  The area of the brain in which the missed connection takes place determines what kind of seizure happens.

Jacob’s EEG showed unusual activity on the sides of both hemispheres as well as in the back of his brain.  So far, misfirings in those areas lead to “absence seizures” or the kind of seizure where it seems as if someone hit pause on the person’s body.  The good news is that this is treatable and that Jake will most likely grow out of it.  The bad news is that it could get worse and get worse at any time.  To prevent it from getting worse and to try to keep control of the seizures, we have already started medication.  Jake will be on medication for a minimum of two years.  At the end of two years, we will assess where he is and maybe wean him off meds, maybe decide to keep him on them.

Jacob is still only five years old and he doesn’t really understand what is going on.  The best he can grasp all of this is to say that he doesn’t like it when his brain falls to sleep and he’s happy to take some medication every day if it stops that yucky feeling.  I’m thankful that he doesn’t really understand all of this.

People have been asking how we are doing and right now, we are okay.  To tell the truth, we’ve all been sick with a lovely 20 day virus, so we all need to get physically healthy before dealing with the emotions of all of this.   I’ve had a couple of hard moments.  One when I picked up a giant bottle of anti-seizure medication and another when I ordered the tiniest medical alert bracelet I could find.  More hard moments will come, as will good moments, silly moments, and sweet moments.

I’ll write more when I’m coughing less, am taking less cold medicine, and when I’ve processed some stuff.

In the meantime, we’re off on another adventure.


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7 Responses to E is for Epilepsy

  1. roarajane says:

    My friend. You have dealt with so many hard things. I’m convinced that God is training you to be one of his super warriors. In this situation, I’m grateful that there are knowable parameters. Epilepsy is a knowable thing, and while it is certainly scary and huge, it’s so much better than having a non-diagnosis hanging around.

    I love you. I’m proud of you. I’m in awe of you. And I’m honored I get to learn so much from you.

  2. Janet Wagner says:

    Yet one more thing for your family – it is hard to fathom! I’m praying for the strength and courage to face it all. Thank you for sharing this all with us – that takes courage, too.
    Love you all!!

  3. I am sorry your family is facing this. I hope the seizure drugs work their miracles. It sounds like you have a mighty tough little guy.

    You did a great job simplifying what seizures are. Hang in there. I am hopeful for you all that he quickly outgrows these absence seizures. It cannot be easy for you to have to watch these. This is said from the perspective of someone growing up with seizures.

    • Thank you! I’ve gotten in the habit of trying to translate medical problems so that I, and everyone else, can understand them. I’m glad it worked! Thank you for your encouragement. I’m following your blog now. 🙂

  4. Pingback: E is for Epilepsy: Quick Update | Back Porch Swing

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