Meet Zander
Zander is one of the sweetest kids you’ll ever meet. On the first day of school this year,
his new teacher described him as a “kind soul”. If you see him on the playground or out
and about, you might not know the challenges he experiences.
Zander’s story with seizures started a bit later than most. He didn’t have his first seizure
until 15 months (that we know of, but as we have learned more, there were some
signs). I got a call from day care that he was running a fever and I would need to pick
him up. Not thinking much of it, I was wrapping up some emails to leave work, when I
got a second call a few minutes later “he’s shaking, we’ve called 911”. When I got
there, he was being loaded into the ambulance and I could see one arm still shaking
and he was not responsive. I met them at the hospital and they said that in addition to
the seizure, they also though the had an allergic reaction to the rescue med given in the
ambulance, which also didn’t stop the seizure. He had gotten red and splotchy and his
O2 dropped. The doctors said he had the flu and that febrile seizures are common in
children under 5 and we would just need to watch out for fevers. What I did not realize
at the time, was that most febrile seizures don’t last that long (approx. 45 minutes, even
after rescue meds). He was transported to the larger regional/children’s hospital and
perked up quickly after starting antiviral meds and was home the next day.
We went about 9 months before it happened again. This time I woke up at 5 am
hearing strange breathing. He was on his face in his crib shaking. When I picked him
up, he felt like he was on fire. We called 911 and he was transported to the hospital.
This time, it was strep throat, and we were referred to a neurologist. In between these
events, I noticed that sometimes he would stare at patterns and “twitch”. I told my
husband “It’s almost like a mini seizure”. Well, it turns out, that’s exactly what it was,
also known as myoclonic seizures. At the first neurology appointment, he was given an
EEG and diagnosed with generalized epilepsy with febrile seizures. That was a rough
day, but we were getting help.
Again, we went another 9 or 10 months. Zander started at a new day care after being
home for a few months at the start of the pandemic. He was only there about three
weeks when we got a call that he had a seizure. Then, three weeks later, another one.
This time, no underlying illness. Both times, he was staring out the window, or more
precisely, at the window screen. After these episodes and having difficulties with
several medications, he was given a genetic test. He had a mutation at SCN1A, which
could include a number of diagnoses, including Dravet syndrome. Our local neurologist
referred us to UCSF and he was given the diagnosis. After starting a new medication,
his pattern sensitivity seamed to go away and he would neither focus on patterns nor
start twitching. We were so grateful to be seeing an expert and to be on this new
medication but did not agree with the diagnosis. Zander went several years, then
months with no big seizures and had only very minor developmental delays.
On August 1, 2023, our lives got turned upside down. I got a call that Zander was
pulled out of the bottom of the pool during a summer camp he was attending. He was
rushed to the nearby hospital breathing, but not responsive. He was sedated, intubated
and airlifted to the regional children’s hospital trauma center, then admitted to the
Pediatric ICU. Once I got the details from the camp in terms of time underwater and
when he started breathing, etc., it was likely he would be OK. He was extubated that
night and back home the next day.
About a week later, we were making popcorn, and he sounded like he was stuttering. I
looked at him and the side of his face was twitching and he was drooling. He looked so
scared. This started to happen several times per day. Then, they got worse and he
would fall over during the short episodes. We went to the ER after a particularly bad
day of 10+ of these short seizures. We then got to take our first trip to UCSF Pediatric
Epilepsy center.
We’ve since added and removed several medications and had several different types of
seizures and only once or twice in the past two years have we gone more than a week
without a generalized tonic clonic (grand mal, aka “big, full body”) seizure. He’s missed
a lot of school and gotten many injuries (broken his collar bone multiple times, black
eyes, cuts and bruises). OK, we now believe the diagnosis.
While he has a “mild case” compared to many with this disease, it’s life changing. It’s
so hard to find the balance between letting our kids be kids and the constant fear that a
seizure could cause serious injuries, or worse. I sleep next to him, if you can call it
sleep. He has had nocturnal seizures, and while he’s been fine, it’s very quiet and the
movement is minimal. Every change in breathing, every snore, or a silence that lasts
too long, is a scare.
There are two things that soften the blow of this disease. The first is that somehow,
Zander is generally happy, smiling, friendly and sweet. Second, is the Dravet Syndrome
Foundation (DSF) and associated parent groups. The facebook groups have been so helpful
to me and my true appreciation came after attending a DSF Family and Professional
Conference. I cried for three days because it was so comforting to meet he community,
talk to other parents, hear from the researchers, meet his epileptologist in person
(previously only seen via telehealth) and realize how lucky we are to have him as
Zander’s doctor. I felt seen, heard and part of an amazing community. I made friends
and felt hope and gratitude. While this condition is life changing, the Foundation
provides hope, support, and community. I don’t know how I would get through this
without this group.