** One of the group presentations for my class on Health and Personal Care was on the topic of Epilepsy. Our family has had some experience in this area with Marshall's sister Devyn, so with the support of my group I decided to write out the details that are her story, and to present it to the class. I ended up with over 4 pages typed, so I condensed it to 2 for the presentation, and basically just stuck to the symptoms. I spent many emotional hours typing and processing, re-living that scary time in our lives when seizures first initially appeared, so I thought I wouldn't let my hard work go to waste, but rather, take up some space in my Autism blog for a different journey, one which I hope will touch you emotionally and also bring some awareness; how seizures don't always look as you may have expected.
Epilepsy: Devyn’s Story
I’m sitting at home on a Thursday morning with my two kids, embracing all of the joy that comes from being home with my 3 months old son Marshall, and my almost 2 year old daughter Devyn. I am in my living room and sitting in my rocking chair with my baby boy, when suddenly my daughter Devyn is standing beside me. I look at her and she just stares back at me. I ask her what she wants and she continues to stare with a blank expression on her face. She has all the language in the world but doesn’t speak. Then I see her swallowing funny and ask her if she is going to be sick. She says nothing… but I wouldn’t want to say too much if I thought I was going to puke either. I put Marshall down in his little chair and quickly run to the kitchen to get a bucket. I’m saying things like, “honey don’t you feel well?” from where I am, and I’m thinking that it so sudden and strange for her to get sick when she’s had a good night’s sleep and a normal morning.
With bucket in hand I
head back to the living room. There I
find Devyn slumped down in a strange position and kind of leaning against the
ottoman but sitting on the floor. I rush
over to her and keep asking her questions, “Here’s a bucket, are you going to
get sick? What’s the matter? Don’t you feel well?” She is not responding to me and I start to
think something isn’t right. “Do you have a fever? Do you feel hot?” I’m touching her forehead and rubbing her
back. She is not responding and she is
not moving her head to look at me, or shifting her body at all. I decide to pick her up and am surprised at
the weight of her… dead weight, she is not helping at all. I’m starting to really panic now, and I can
barely carry her but I take her to the bathroom where I have to bend down to
dig through a box to find the thermometer, thinking that even though she
doesn’t feel warm, maybe there are answers in that number. Because I have to bend down, I almost drop
her. I have to hold up her head and when
I look at her face again, her eyes are blinking too long, and then I see that
when she opens them, her eyes are rolling back in her head. God what is happening right now? Rolling eyes is a seizure symptom, isn’t
it? But she’s not convulsing or moving,
her limbs are lifeless. “Devyn, honey,
open your eyes. Talk to me, what is
happening?” I don’t know what this is
and I don’t know what to do. Do I need
to phone 911? Is this one of those times? Just snap out of it already! Stop it! No, no, this is not my story, this is not
Devyn’s story.
I decide to forget the
temperature check and struggle to carry her back to the living room, and back
to my rocking chair. I grab the
phone. Her eyes continue to roll and
close for too long, and she is still dead weight in my arms. I don’t know what to do and so I dial my husband’s
number, he is at work just 5 minutes away.
As it’s ringing I know I’ve called the wrong number… meaning I know I
should be on the phone with 911. I don’t
hang up though, knowing that Danny will keep calling back and worry if he can’t
get through. He answers the phone and I
lose my composure and am crying and panicking… all I say is, “Something isn’t
right with Devyn, I don’t know but I need to call 911.” He says, “Call them, I’m coming home.”
I hang up with him and
watch myself dial 9-1-1… I can’t believe this, I am calling 911 for my
child. This isn’t happening, this isn’t
happening, wake up from this dream, from this nightmare. The phone is ringing and Devyn’s eyes are
blinking for longer periods than before.
I start saying, “Devyn open your eyes, are you sleepy? Please don’t sleep right now, you NEED to
stay awake.” As I’m saying this I know
that when I tell her ‘sleep’, I am thinking ‘die’. Please don’t die.
The 911 operator
answers and asks me who to send and takes my resident info, and then asks me a
bunch of questions. “Is she breathing?”
Yes. “Are her lips blue?” I look at Devyn… I don’t know, are they blue? They look pretty normal, and now I can’t
picture what normal is supposed to look like.
I tell her,"no, but she does look a little pale". There is more talking about what has happened
up to this point. And then, I can hear
them, the sirens, and there coming for my little girl, they’re coming because I
can’t help her, and because I don’t know what is happening. The operator tells me to lay Devyn on the
ground and I do. And what comes to my
mind is, “Stay away from the light, God please don’t take her from me”, and I
want to say it out loud, but I hold back and tell myself, NO, this is NOT what
is happening right now. I am not saying it.
But I wonder if it is. Then Devyn stops blinking all over the
place, and her eyes are still, and she is staring up at the ceiling
calmly.
The paramedics are here
and they come inside our home… 5 huge men hovering over this little almost 2
year old girl. Devyn starts to look in
my direction, she is gaining control back, and the paramedic helps her to sit
up. She has come out of whatever that
was. She is quiet, but she is back. They let me pick her up and sit her on my
lap, and this time she is helping.
Praise the Lord. They check her
blood sugar and temperature, and they hear my recollection of the story. They tell me based on what I have said, that
she has had a seizure. They tell me that
her levels are normal, and how it is typical for kids this age to have fibril
seizures (high fever), but Devyn doesn’t have a fever. I ask about the lack of convulsing, and learn
that there are many forms of seizures. Devyn
starts to cry a little as she comes to realize all of these people in the
house. They are GREAT with her though,
and she knows I am right there. They
tell me that she should go in to be assessed at the hospital, and offer to take
her by ambulance. I feel like the ride
might freak her out so I pass, and decide to take her in myself.
Danny is home now,
seeing Devyn as herself. The paramedics
leave, and I am so thankful that Marshall has been content to be ignored for
this whole time… he may not have had a choice anyways. I tell Danny the jest of it, and I can see in
his reaction that he questions if I have over reacted. Jerk.
Lol.
So he starts to get his
clothes ready to take a shower, and then I look at Devyn in my lap and she is
blinking funny again. I try to talk to
her but she isn’t responding. They told
me that she would be tired afterwards, but this weird blinking? I call out to Danny saying, “She’s doing that
thing with her eyes again!” He comes
over quickly and as soon as he sees her, he knows, and he apologizes for
thinking I overreacted. This time it is
fast, and Devyn doesn’t lose her bodily control, she just blanks out for a bit.
Danny skips the shower
and I quickly pack a few things for the hospital. Abbotsford Regional Hospital has been open
for 3 days… our first visit and for this reason. We end up staying there for a few hours only
to be transferred to Children’s Hospital in Vancouver. So we went home to pack stuff for a possible
overnight stay, since it was now nearing dinner time. We would have to sit in emerge at Children’s. The drive out is very silent. Devyn is in and out of sleep which I’m
thankful for since we were told not to feed her anything, and Danny and I are
left alone with our own scary thoughts.
I prayed the whole way. One scary
episode could be totally random, but another small one shortly after? I know that kids have multiple seizures and
that a tumor is a possibility. That’s
where our heads were at.
We arrive at Children’s
and I get to tell the story over again for what must be the 10th time, and then
again to the nurse when we are seen which wasn’t actually too long
afterwards. It is now around 8pm and
Devyn is totally back to herself and not tired at all anymore. She is walking around the little room,
impressing the nurse with her drawing skills, and chatting up a storm with her. The nurse lets us know that she will need to
stay overnight to do one test in the morning, and then she gives Devyn a
popsicle. Danny and I learn a bit more
from the nurse about seizure symptoms, and what to do if one happens, and also
a bit about the different types of seizures.
The room is pretty relaxed now and we are not feeling unsettled or
anything. Danny decides to take Marshall
home with him since only one parent can stay and we decide that it should be
me. The nurse leaves for a bit and we
are waiting to see the doctor who will talk to us more about the testing
tomorrow. Devyn is now sitting on my lap
and enjoying her popsicle. A few minutes
go by and I notice she stops licking and is just holding the stick in her hand
and seemingly staring at it. I can’t see
her face since she in on my lap, and I don’t think much of it, but I ask, “are
you all done honey? Do you want me to
throw it away?” She just keeps staring
at the popsicle and says nothing. Then
suddenly she vomits… all over herself and all over me. And I think to myself, she hasn’t even eaten
anything today how does she have anything to vomit? And then she pukes again, and it is running
down my legs and everywhere, and I remember that the nurse just told us that
gagging or vomiting was a seizure symptom, so I send Danny out to get the nurse
quickly. Devyn pukes again, and I am
standing with her now, more concerned about how wet I am than anything
else. I give up and sit back down with
her as the nurse and Danny come rushing in.
The nurse takes one look at Devyn who is not crying in response to what
has happened, who is not saying anything at all, and the nurse says, “This is
not the same girl that was in here before, she just had another seizure.”
And then suddenly there
was chaos in the room. Both Danny and I
were trying to remain calm, but freaking out on the inside. Nurses were coming in and out of the small
room, they said that they now needed to get her on an IV immediately with
anti-seizure medication, and also with antibiotics for possible
meningitis. It was 9pm, Devyn was ready
for bed, she was crying and they could not get the IV in, she was scared. They tried and tried, and she was screaming
in pain, and they had to wrap her in a blanket so she couldn’t move. And that’s when Danny broke down and had to
leave the room. Great, they say that one
parent loses it and one stands strong in these scenarios… I guess I know my
role although I don’t know how I’m holding it together. The ladies trying to do the IV give up and
call in the specialized IV team who gets it in quickly. It was brutal to witness, and I was so glad
it was over.
Danny took Marshall
home, and Devyn and I went to her room in the Neurology ward. We were in isolation as nothing had been
ruled out yet… thankfully, because I had been exposed to her already, I did not
have to mask up and could sleep in the room with her. We stayed at Children’s Hospital for 4
days. Devyn had an EEG (electrodes
watching her brain waves), an MRI (pictures of the brain) as well as a Lumbar
Puncture (spinal fluid) done. All of the
results came back clear, meaning they found nothing that caused the
seizures. We were relieved. They assured me that this was good news,
although it simply just felt without answers.
How can we try to fix something if nothing is wrong? The Neurologist told us that it is typical
for young children to have seizures for unknown reasons, and that often after
two years of continued anti-seizure medication they wean them off, never to
have one again. They also told me that
although Devyn is unable to respond to me, she can definitely hear me during a
seizure, so I should speak calmly and words of comfort to her. They told me that just because her seizures
have been Complex Partial, that it doesn’t mean they will only be, and she
could have any kind of seizure in the future. I asked about the term Epilepsy, and the Dr
said that it is simply a term used for someone who has had more than one
seizure. Devyn has epilepsy. What is life going to look like for her? So many unknowns.
We were discharged from
the hospital with a written diagnosis for Devyn of Complex Partial
Seizures. She was on an easy medication,
at a low dosage and with the only side effect being sleepiness, so we were to
give it to her daily before bedtime, for 2 years. A 3 month later EEG, followed by annual EEG’s
were scheduled. Two years later when
Devyn was 4, she had had no seizures in that time frame on the medication, and
her EEG hadn’t changed thus far. We went
in to see the Neurologist all ready to talk about the plan for weaning before
Kindergarten, only to be told that in her recent EEG a spiked pattern has
appeared. Awesome. Apparently many people have spiked patterns
in their EEG, but don’t have seizures.
Of course, the likelihood for Devyn increases based on history. So we decided to leave her dosage the same,
which was too small for her weight actually, but to leave it another year to
see if she would seize through it, at which point we would up the dosage. That whole next year, no seizures. She was doing well in all areas of
kindergarten and home life, and there were no concerns. So, we decided to try and wean her off her
medication when she was 5 years old.
Strange things were happening at night, and since I only knew what
seizures had looked like during the day, I was unsure of it. After a few nights in a row though, I knew
this wasn’t normal. She would wake up
often crying during the night, and not responding to me… however it was the
middle of the night and I didn’t know if she was just tired. One of the nights she didn’t wake up at all
but then in the morning, she slept an hour longer and when she did wake up she
was just sitting in her bed looking so exhausted. The final straw for calling the Dr. was the
night when I had already decided it was a seizure, told her it was ok and to
lay back down, she was crying, but as soon as her head hit the pillow, she
stopped and was instantly asleep. It was
freaky. I called the Neurologist who
told me that Devyn was definitely having seizures and to put her back on her
full dose. She hadn’t even come fully
off of it up to this point. I gave her
the full dose the next night, and she slept peacefully through and woke up
normal.
Fast forward to 2 years
later to present day. In September Devyn turned 7 and entered grade 2. No seizure activity at all over the past 2
years. She had her annual EEG and the
results showed much improvement, her best one yet since the spiked pattern appeared!! So, in last month we tried to wean her off
over a 3 week period. There was one
incident at school early on in the weaning process, where she ended up becoming
confused and thought it was the end of the school day, so she grabbed her
backpack and jacket and headed up to the office waiting for me. The secretary saw her outside and went to get
her, and of course she was now in tears.
Her teacher came and got her and they joked about how sometimes it’s
funny when you make silly mistakes.
Being confused or tired after a seizure is common, so of course both the
teacher and I weren’t sure if this was something,
or pure coincidence. Devyn was fine
the rest of the school day, and because it was so strange, I figured we would
see something else that would confirm that she had possibly had a small seizure
that went unnoticed, and only saw the affects from. When I asked her what happened, or if she felt
weird or anything, she said no, it was just that she was busy doing something
else and didn’t hear the teachers instructions about the class going to the
French room.
There has been nothing at all since
then and for the rest of the weaning of the meds. And today it has been about a month of her
being off her medication completely, and NO SEIZURES! She is ‘at risk’ for the next year, and we
will continue to be extra cautious in the water, but as long as she doesn’t
have a seizure, we will not be scheduled for future EEG’s or Neurologist
appointments. It’s been a 5 year journey
that appears to have come to an end, but because seizures for Devyn have been
unpredictable and without cause in the past, we really never know if she will
seize again. Either way, she is a happy,
caring child, a great student, a true shining light, and a true blessing to her
brother Marshall and to our family.
