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Our perception of normal has changed as Intractable epilepsy is a medical term we
well. I’ve realised that normal is underrated. became very familiar with. We watched our
I actually never wanted normal kids - I toddler’s seizures intensify, her sleep always
wanted extraordinary kids. I certainly got disturbed, violent mood swings and self-
that, although I didn’t necessarily want harming behaviour. At the time, we didn’t
my kids to be extraordinary to medical realise the significance of the first anti-
science. convulsant failing to control her seizures.
The fact that one failed anti-convulsant
We live in a parallel world to family has an effect on the probability of any
and friends with kids the same age as others working. We tried 17 further anti-
ours. While they worry about the letter convulsants in the belief they would help.
sent home from school about bullying,
I worry about the family of the student We forced medicine into Jaeli in the belief
who passed away in my principal’s that it would help her, only to find that it
letters. I worry about co-ordinating a did more harm than good. We became
1:1 adult to child ratio when I leave the experts at dosing, crushing, hiding and
house than worrying about what my monitoring the efficacy and side effects
child might do to embarrass me. I worry of various medicines.
about what I have or have not done to
cause my child to cry uncontrollably for By the time we had tried 10 anti-convulsants,
hours and less about whether I topped Jaeli’s seizures were the worst they had
up my Nurofen supply. I worry about ever been. She was having hundreds of
balancing my energy between finding a seizures every day. She couldn’t eat or walk
cure and treating the symptoms and less without suddenly dropping to the ground
about how much energy I’ve dedicated or flinging her food across the room. We
to each child. were losing faith in Western medicine.
We tried alternative therapies and the
Our suspicions were first aroused when Ketogenic diet; an extremely controlled
Jaeli was 15 months old. My husband diet requiring hospital admission.
noticed very subtle eyelid flutters and
eye rolls. The first Paediatrician we We felt like we were racing the clock. The
saw dismissed us as neurotic first time longer the seizures persisted, the more
parents and told us to go home. We were damage was being done. Our vision of our
already pregnant again and dissatisfied normal little girl was slipping away with
with that advice. The next thing we did every failed anticonvulsant.
was the first step of our epic diagnostic
journey. We saw multiple specialists and even
reached out to modern medical detectives
We took our toddler to the emergency looking for a cause that would lead us to a
department of the Royal Children’s magic cure. The more specialists we saw,
Hospital. Within an hour, our suspicions the longer our list of problems became.
were confirmed. Our baby had epileptic The list ranged from chronic obstructive
activity manifesting as eyelid myoclonus from sleep apnoea to autism. The more
seizures. With this first clue, we thought we found out, the more confused we got.
epilepsy explained all of the symptoms, a We questioned every new clue. During the
belief we held for the next 3 years. time, Dr. Google was not very useful.
58 may 2017 | mychild
