E is for Epilepsy: Good News, Less Good News, and Adjustments

A few weeks ago, we saw Jake’s neurologist for test results from his latest EEG.  Because I didn’t post about the EEG and since Jake is super cute, I’ll walk you through the EEG first.

First, I’ll remind you of where we are or introduce you to our story.  If you want the long version of any of this, our whole journey is on this blog under “E is for Epilepsy”.  Jake was diagnosed with epilepsy in December and has responded amazingly well to his medication.  The mood swings, the anger, the frustration, the inability to sit still, the headaches, and the seizures have all diminished greatly.  Until an EEG shows that there are no seizures, we have to keep doing them and adjusting medication.  The EEGs are all sleep-deprived tests, so we all get to stay up very late and get up very early.

We had Jake’s second EEG in March.  Since we already knew the drill, I felt like I was okay to manage the day on my own.  Greg stayed up with Jake until 11 p.m. while I took a sleeping pill at 9:30 p.m., and set three alarms for 3:30 a.m.  I woke up, got Jake up, and kept him awake with a minimum of fuss.

Jake loves to dress up for doctor’s visits, usually in his medical scrubs, but this time, he wanted to wear his Superman cape.  Jake is a very cute kid, but with the addition of the scrubs or the cape, he melts everyone we meet.

This is my little superhero on our way in to the hospital:

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Jake did a minimum of hopping, jumping, and generally being nuts in the waiting room before we got called back and began the process of getting him hooked up to the machines.

This is not a comfortable process and unfortunately, Jake had a rough time with it.   The tech has to scrub his scalp, face, and chest with a gritty paste to make sure his skin was completely clean for an accurate read.  He hated this part and I ended up getting up on the bed and singing to him while he got hooked up.

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Once he was hooked up, the hard part was over and except for having to blow as hard as he could on a pinwheel for 5 minutes straight, he thought the rest of the test, especially the flashing light part, was really funny.

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After this part, he and I got to curl up and take a nap while they read his brain waves.

He slept for about 20 minutes and the test was done!

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On the way out, we had to stop and do a pose in front of the Neurology door, which has moon and stars on it.  If you don’t know my history with sun, moon, and stars, it’s here: https://sistertwo.wordpress.com/2011/11/22/sun-moon-and-stars-the-tattoo-story/

And here’s Super Jake!

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To keep me awake and capable of driving and functioning, I needed a lot of coffee.  I overestimated how much I needed and when we got home, Jake took a nap while I buzzed and hoped my heart would eventually stop racing.

We all recovered just fine and then began waiting for the results, which we got last week.

The test results had both good news and less great news, since I’m refusing to call it bad news.  The good news is that JAKE IS OFFICIALLY SEIZURE FREE!

The other news was a little more discouraging.  The EEG still showed spikes in his brain activity.  Those spikes, without medication, would have become seizures.  A seizure happens when a spike lasts for 10 or more seconds.  He still has spikes, but they are only 2-3 seconds, so they are not considered seizures.  He shouldn’t be having any spikes at all, so we are adjusting his medication by 2 ml a day and will do another round of blood work and another EEG as soon as the blood levels show the right amount of medication in his system.  I was really hoping for no spikes at all, but I’m okay with this process taking a little longer than I thought.

When we first saw our neurologist, she diagnosed Jake with Epilepsy with Absence Seizures.  Absence seizures, formerly called petit mal seizures,  are the kind of seizure that cause symptoms to just spacing out, except the person is not aware of what is happening.   Imagine losing 10 or more seconds, several times a day, and how that would feel!  If you are alone, it wouldn’t be as obvious, but imagine being five years old and in a Kindergarten class and how disorienting it would be if every 20-30 minutes your classmates had suddenly moved, your teacher was talking about something different than you thought, and someone was probably upset with you for not paying attention.  Pretty much, it stinks.

Upon reviewing Jake’s case a little more carefully, our doctor identified the seizure Jake had in October, the scary one, as a grand mal seizure.  Even though he didn’t shake, his muscles still tensed and released, he lost control of his body, he couldn’t speak, and he was unconscious for about 3 minutes.  With both grand mal and petit mal/absence seizures occurring, Jake has now been diagnosed with Generalized Epilepsy, which is a little more serious than Epilepsy with only absence seizures.

Since he has had more than one kind of seizure, the likelihood of Jake’s epilepsy progressing is slightly greater than we thought.  Thankfully, since the seizures are under control, we are hoping that the medication will take care of the epilepsy completely.  I was finally able to summarize all of this in a way that our doctor was happy with, which is that we don’t need to worry about the seizures, but we do need to be very watchful and I need to record any strange behavior and be careful to report it to her at our next visit.

As always, all of this is just one part of our life, but a big part.  I will be having a hysterectomy next week and while I recover, I will be trying to read as much of this book as I can:

epilepsy101

I’m hoping it will help me understand all of this a little better, get me familiar with the new language I need to be fluent in, and aid me in being the best advocate for Jake.

We are so thankful for the doctors, nurses, techs, friends (especially Heidi and Kara Sexton!),  and our family who have supported us in our journey so far.  Jake especially loves our neurologist, Dr. Chitniss.  He insists on dressing in his scrubs to go see her and she always calls him “Dr. Jacob” and asks how his patients are doing and what surgeries he has performed lately.  This time around she asked him if he could listen to her heart and I managed to catch this sweet moment:

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We love you all and thank you, as always, for the continued prayers and support.  We are thankful to have people who cheer us on in our journey.

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