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Tues 12:57pm — I’m currently sitting in a Starbucks down the street from Kyle’s school. He had a small cluster of seizures yesterday morning at school, but was “fine” the rest of the day.
However, as I was getting ready to leave for work today the wife called just before 9am to say that the school already called that he had another cluster, but these were a bit longer and there was more seizures in the cluster.
HER: “I’m going to the school now. Can you please call both neurologists and ask what should we do. Can we move up our appointment with Dr ____ to today? Or should we just check ourselves in to the ER so we can get another EEG and eval done?”
ME: “I’m on it.”
So I called both docs. Our regular neurologist and our 2nd opinion neurologist who may become our regular.
But of course it was 9am when I called so I knew it could be hours before I got a call back.
So at about 9:20am sitting alone in my house I texted the wife and said “I’m gonna come up to the school now cuz I’m feeling helpless here”
To which she replied “ok. I’m here now and he’s sleeping peacefully”
I raced up there and that’s where i found them. Kyle asleep in a little nook in the classroom with wifey sitting next to him.
Thankfully the rest of the kids were at gym so it was nice & quiet in there.
And I pulled up a chair and that’s where i sat for 30 minutes or so.
The school nurse & psychologist stopped by to ask some questions and see what our next steps are.
“We try to get in to see a doctor today…maybe an overnight EEG in a hospital very soon but in the meantime he’s gonna come to school each morning and we’ll see what happens”
I left the classroom and sat in my car to make a few calls.
A few minutes later wifey texted me “he’s up and lying on me” and a few minutes later “he’s sitting at the table asking for popcorn”
To which I replied “cool. let’s go down the hill and sit in the bagel store and wait for the doctors callbacks”
So at about 11am we left him and scarfed down bagels.
And I said “unless we get marching orders to do something today like dr appointment or an EEG hospital visit, I’m gonna to work this afternoon cuz i anticipate a lot of days off in my future.”
At about 11:45am the 2nd opinion doctor called and we’ve got a 2:15pm appointment this afternoon. So no work for me today.
So then we realized weve got almost 2 hours to kill and we’ve got 2 cars with us. So wifey went to run a few errands and I’m sitting in Starbucks down the hill from his school so one of us is close to him just in case.
So I’m sitting here slowly drinking a clementine soda so I can justify sitting in their comfy chairs for 2 hours.
🙂
I’ll pick him up at 1:45 PM and I’ll meet wifey at the doc’s office.
What am I expecting out of this doc visit?
Well because this doc isn’t our regular neurologist I’m anticipating that he is gonna second guess some of the med decisions that our regular doc recently put into place.
And because he’s not our regular neurologist I’m expecting that he’s gonna want to do his own EEG at his affiliated hospital with his people reading the results.
So I’m expecting an overnight stay in an unfamiliar hospital will be in our near future.
But unless it’s tomorrow then we’ve just got to live our lives, keep our routine, and send him off to school and hope for the best.
Sucks but what else can we do?
And just to put things in perspective these are not the scary 3 minute long “grand mal” seizures that we are seeing.
They are these tiny 15 seconds max jobbies that he has sometimes. And usually he has them and they don’t phase him and he continues on with his day.
What was different this week was that they were coming in clusters, sometimes 3 of them in a 5 minute period….and they were making him sleep.
So we need to figure out what the f–k is going on.
But just like autism there’s no easy answers with epilepsy.
Maybe puberty is wreaking major havoc. Maybe it’s something else. We tweak this med and see what happens. We tweak the VNS.
All I know is that it feels like we can’t make it a year without an overnight stay in a hospital and that just may be our lives from now on.
(He was in the hospital in August for the VNS surgery)
That’s all I got. A little shitty slice of life post for you.
😉
THE END.
Mmm New York food!
Maybe there's a big hurricane coming! A change of weather can probably cause more seizures!
My son has Lennnox Gastaut which means he has frequent seizures. I feel your pain. Not sure what meds he is on, but Keppra caused my son to have more seizures. If you feel the frequency has increased since adding a new med, don't hesitate to speak up and demand a change. Good luck.
sending positive thoughts your way for you and your family
Sorry AD. You and wifey…strong parents.
I don't have any advice to offer, but just wanted to let you know, I am thinking of you three. Best of luck at the appointment.
hang in there….it is the most shittiest thing that could happen to your son as well as mine…I have come to hope that when he is done with puberty (don't know if it is 23 or what for boys) but that he will be better then….until then one day at a time and I cherish the good days of no incidences of seizures or autism outbursts…..the best of luck with neurologist…my son had tried all seizure meds with about 4 more to try….darn puberty lol
My son is still having seizures every 5 weeks or so (had one last Thursday), but they respond to Diastat and he hasn't had to be hospitalized in nearly 2 years (following 10 hospitalizations in the year and a half prior). I call this the new "normal," but I'm always wondering when it will be replaced by the new new "normal." It's a roller coaster ride. Good luck with your new normal.
We are looking at VNS this summer. Meds aren't exactly helping and after two 4-day weekends in two different hospitals, we're ready to move on. We finalyl have an official ASD diagnosis, along with epilepsy. How long has Kyle had his VNS?