“It gets better”…. These were the words said to me by the
school administrator when I had to tell them that Ashlynn was admitted to the
hospital again after two more ER visits and another three-day admittance the
week before. Living with a child with epilepsy makes these words seem so empty,
but it is a phrase that I clung to over the course of that week. Last Saturday,
after two and a half years of medication and chaos, she took her final pill and
we are seizure free. It’s been a long road, but it did get better.
Ashlynn was diagnosed with simple, partial seizures in Fall
of her Second Grade year. The simple part means that she is coherent and can
verbalize during the seizure. The partial part means, for her, that only one
side of her body is affected. So for her, she experienced complete paralysis on
her right side and it went stiff without her ability to control it. The first
time we experienced a seizure was when she was four. She was walking hand in
hand with her dad and she started giggling. She went limp in his grasp and
folded over onto her right side; he told her to pick up her feet and walk. She
said “I can’t myself is tickling me!” After that we took her to the doctor and the
physical turned up nothing so the doctor told us to ignore it. A few months
later we were eating at the dinner table and she folded up again. This time she
was horrified because she knocked over her water glass.
These episodes happened periodically and all of the internet
searches I did revealed nothing. We told her to ignore it and pretend that it
didn’t tickle so she wouldn’t draw attention to herself. It wasn’t until
December of 2012 on opening day of the new Hobbit movie that we got concerned.
That morning we went to Denny’s for breakfast and she was so excited!!!!
However, walking into Denny’s it happened; She crumpled up and her dad scooped
her into his arms and waited for it to go away. Over the course of the meal it
happened again and then about once an hour after that throughout the movie. We
still were not concerned, but I started recording the time and length of the
“tickling” episodes.
We recorded them over the weekend and by the end we had had
over thirty episodes so I made a call to our doctor to have them checked out.
While we were at the doctor’s office she had another one and they immediately
called the pediatric ward to set up a bed for us. That was the beginning of our
adventures and the chaos that followed. Nothing is normal when you have a child
with epilepsy. Your idea of what is normal in life constantly changes.
When you have a child with epilepsy even a simple trip to
the Balboa Park Carousel can create a panic attack as a parent. She was an
independent seven year old who wanted to ride alone. I had already witnessed
her standing in the middle of the kitchen when one came and she fell, face
first, onto a stool; bloodying her face and knocking out her tooth. The doctors told me she couldn’t take a bath
because she could drown, but she had one in the shower and when she fell she
bloodied her body on the corner of the counter and became wedged in-between the
door and the counter so we couldn’t get to her until she could physically move
herself once the seizure was over. They happened everywhere and it was hard to
predict. Riding the carousel for those two minutes without me meant that she
could have a seizure and I wouldn’t be able to catch her or fix it while it
happened. The desire to hover and protect her was a conflict I would experience
everyday for the next two and a half years.
At the beginning, we had periodic breakthrough seizures when
she would grow and then we would adjust her medication to make them stop. The
medication was pretty successful for us and the only side effect we experienced
on Trileptal was that it mellowed her out, which for us was a good thing. She’s
a kid that moves nonstop and can never sit still. The medication took care of
that and, while it dampened her intellect by a bit, we were so thankful to have
it. During this time we met amazing people through the Epilepsy Foundation who
became dear friends and helped us navigate the territory. They helped her meet
kids just like her and she became proud of who she was, epilepsy and all.
Unfortunately, having epilepsy brings you close to these people though because
you all understand the bad times.
Our first bad month happened in February. I was scheduled to
take the California Bar at the end of the month and my stress level had the
whole family on edge. At the beginning of the month she started having seizures
at school and I would pick her up afterwards. By the end of the first week it
became our new normal. I would drop her off at school with a brave face and
then drive away crying, knowing that she would have a seizure and hoping that
she wouldn’t get injured. She just wanted to be normal and I wanted to let her
pretend that she was. I would be home long enough to start studying and then I
would get the call to come get her. It was awful. We upped her meds twice
during this time, but it didn’t do anything. Her seizures stopped the day I
took the last examination.
Our last and worst period started after an extended series
of unfortunate events. Her uncle, who was living with us and who she was very
close to, left for boot camp. Then her dad, who is a Marine, left for Afghanistan.
Then her Great Grandpa died and the final straw that set the whole thing off
was when another uncle, who had been working in San Diego, left to return home.
That next day was the start of four long months. She had between four and
twelve seizures everyday for that entire period.
Under the advice of the neurologist, we upped her Trileptal
dose until she was dizzy, nauseous and confused all the time. When it didn’t
work they left that dose where it was and added Keppra. Keppra changed her. I
lost my beautiful girl. She went from being an intelligent, happy child to a
depressed monster. She would scream at the top of her lungs over the smallest
thing because she was so frustrated and angry. Then she would cry because she
had yelled at us. When she wasn’t yelling or crying she would sit in her room
with her headphones on because she couldn’t deal with life and didn’t want to
be around people. Even at school she lost all of her friends and became
socially awkward. Taylor Swift’s music was her only relief from a world that
had turned upside down.
I was so worried. By this time she pretty much just did her
work at home. I was trying to teach her, but her brain was so foggy that we would
work on one concept for fifteen minutes and then she would be frustrated and
need and break, but when she came back from her break she wouldn’t remember
what we had gone over so we would have to start again. This would get her even
more upset because she knew that she should remember, but she couldn’t. Doing
three math problems could take us over an hour. One day I turned in the Math
homework that she had completed and the teacher asked her to sit down and do
the unit test. She couldn’t do one question. He asked me if she had done any of
the homework that I had turned in for her. I went home and cried. It had taken
us so many hours of chaos to get those few pages done and all he could see was
the failure of that moment.
When the two medications still didn’t work we added Onfi on
top of them. This caused sensory problems, short-term memory loss and major weight
gain. She gained fifteen pounds in six
weeks (20% of her body weight!). She couldn’t remember a chore long enough to
hear it and make it to the room where it needed to be done without forgetting
what she had gone there for. We couldn’t make it through a grocery store
without her crying because of the noise. I tried to go through the car wash and
the pressure and sound had her screaming in pain. She took to carrying around a
bumpy elephant that she found because she could distract herself by rubbing it when
we had to be out in public. She would panic if she didn’t have it when we left
the house. Her dad was still deployed, and she was never in school long enough
for me to get anything done, so I had to bring her on errands. When I would
bring her out I would put her in the shopping cart, if they had them, in case
she had a seizure. Oh, the looks I would get from people who assumed I was a
lazy mother whose child was much too old to be in a shopping cart.
I remember one night very clearly. She wanted so badly to
perform “The Nutcracker” with her ballet troop, but by this time she was on all
three meds and not really there in body or spirit. I had brought my camping
chairs and activities for my youngest daughter, Brielle, and I to have while we
waited outside the doors. We couldn’t drop her off because I needed to be there
if she had a seizure. At any rate, one hour later she came out stumbling and
said she couldn’t do anymore. She was exhausted and dizzy to the point of
collapse. I had to carry her, the two chairs and hold Bri’s hand as we
navigated through the busy parking lots. She was totally limp in my arms and I
had to keep her talking to make sure she wouldn’t pass out. She couldn’t even
make a coherent sentence. That’s when I knew it was bad. She never got to be in
“The Nutcracker.” They let her wear the costume and help them during
intermission, but she never was able to dance.
At the end of this time her seizures were lasting long
enough that we were rushing to the ER and using enough emergency breakthrough meds
that she wouldn’t remember how she had gotten from one place to the next when
she was alert enough to realize that it had changed. She was admitted twice and finally in December we started seeing the light at the end of the tunnel. She was slowly
taken off Keppra and Onfi and she started to improve.
In January she started smiling again. I had missed her laugh
so much. She ended up being homeschooled for three months, but this Spring she
reintegrated into a fabulous school that understood our complicated dynamics
and loved us anyways. She is doing a presentation there next week on her favorite
subject in school and she is doing it on Math. She has friends again. We
completed a psycho-neurology evaluation last month and she is average or above
average in everything. Now that she is
off medication she moves constantly and has a hard time falling asleep, but it
is a side effect I’ll take over anything else. I am so thankful to be able to
say…
It got better.
