For Families In Panic Or Calm, Dealing With Kids Sick Or Well

A happy ‘no-limits’ childhood with epilepsy

Dealing with the unknown: one family’s experience of epilepsy 

Illustration of a girl throwing paper aeroplanes

This little girl hasn’t lost her sense of fun

Isabel known as ‘Izzy’ to friends is three, cute enough to eat, smart and energetic. 

But one humdrum morning, Izzy didn’t bounce up with her usual esprit.  Mum Emma went into her room and found her in a vacant, ‘spaced out’ state. Something was wrong although there were no spots, rash, temperature or cries to indicate anything bad. Emma immediately rang Whittington hospital, London and in ten minutes the family were walking into Accident & Emergency.

Isabel received no diagnosis on that fateful day and the situation remains frustratingly cloudy even now. It’s been a year since the seizures started. They seem to appear every four months. The question on the family’s mind is will it settle? Maybe, but it’s currently unknowable. And the four-month pattern, should it continue, coincides with their flight home to Canada. This leaves a nasty tension in the air.

One advantage of Isabel’s epilepsy is most of the time she’s fine and there’s nothing to remind her of it (no lingering pain or symptoms). Trips to the hospital are infrequent or kept to a minimum.

Isabel takes oral medicine twice a day and copes well. Emma did lots of bath play with syringes to get her used to the idea. She didn’t want it to be a ‘battle of wills’ The medicine doesn’t taste of fruit which would have put Isabel off but of yummy caramel. Isabel even gives it to herself which makes her feel in control. There are no obvious side effects. And she understands this keeps her away from the hospital, which is a powerful motivator!

Girl playing doctors with her teddy

Checking Teddy’s vital statistics.

Isabel’s first week in hospital, at three years of age, was traumatic. Everyday was full of tests (daily bloods, MRI, ECG, Cat Scan & Spinal Tap). It was scary for mum & dad Alex – to watch her go under general anesthetic for the spinal tap. And horrible to see her held down for bloods, for what seemed an eternity, & have cannulas replaced that she’d unwittingly pulled out. It was trying to have to reason with her that all of it was necessary.

They considered having Isabel treated privately. But decided there was less assurance & more risk in not keeping with the regulated UK’s NHS. It took a leap of faith placing  trust in the NHS but they’ve no regrets.

Her parents researched at the start about epilepsywere advised by Great Ormond Street Hospital. (GOSH)

After Isabel’s first seizure there was an endless two month wait for the MRI brain scan results. Much was therefore unknown. It made other tests feel pointless. Dad who always seeks answers found this frustrating. It felt hard to communicate with medical staff when not physically in hospital. To get in touch with GOSH by phone was a labour. There’s a downside to being at such a reputable children’s hospital! They had to exercise patience  interacting face-to-face with medics if their questions were unanswered, hoping their professional attention was diverted towards their kid.

A long wait made them feel powerless. It was harder to settle, to digest or plan. And humbling to be reminded of the limits of medical knowledge. Isabel’s seizures had only lasted a year, so doctors were unsure how it would go.

Isabel was scared after her second seizure. She woke up groggy, head hurting, terrified, wondering why she was in hospital after being a good girl – taking all her meds. She thought it was her fault & needed reassurance, some explanation from mum & dad.

Emma and Alex work hard at being normal with Isabel & staying calm, despite gnawing worries. Isabel’s an adventurous girl, physically and mentally. They encourage her to climb trees (like her athletic older sis Tania), play ball, hide & seek, all the usual stuff. They don’t wish to set limits on her ambition. But with so much hanging in the air, mother Emma is usually a few paces behind, keeping a watchful eye. Also, any accidents that occur in play, like a recent broken leg, mean more time in hospital where fears resurface.

Girls packing case & teddy

Teddy’s ready for all eventualities.

The medicine Isabel takes slows down the activity of seizures. The parents trust ‘the experts’, and feel their daughter will get help if needed. But travel of any kind changes the environment adding uncertainty. They are cautious of foreign trips, such as a beach holiday to Asia – a possible job perk. An emergency on a plane could necessitate oxygen – though all planes have oxygen masks, so that at least is covered!

The family are reluctant to uproot from the UK permanently until on solid ground with diagnosis. But their extended family in Canada feel far away and are sometimes left out the loop, as geographical distance means delay in communication. Alex has a demanding job as a creative director of Google London. But his company has been generous in offering time off and assistance.

In terms of their expectations for treatment, they had few,  as they’d no experience of childhood illness or UK medicine. The Canadian system Emma says is a ‘slow process’. She feels the UK doctors are quicker to inform. Emma also feels they make child safety a first and only priority. Having lived in LA Emma believes the US system inevitably place financial considerations in the foreground. If they’d been in the States they’d have had insurance to cover costs. She acknowledges that it can be a ‘black hole’. That it can bankrupt you & that some might not afford care.

Reactions to Change

Girl at play

Girrrrl power!

When Isabel was first ill, their impulse was to flee to her birthplace: sunny California and escape the depressing situation. But there was no ‘escape’ and they needed to be cautious.

Isabel seems to bounce back quickly from her episodes at hospital. She interrupted us cheerfully several times: to show me her dinosaur game, to entertain us with a song & ask mum to make paper planes. She wanted mummy time and wished to be included in our dialogue. She’s recovered well from the ordeal & her family provide much reassurance. They are careful to balance the attention of both daughters, for example asking Tania about her day, ensuring she spends time with friends.

In two years if Isabel’s stable they’ll reduce her medicine. Emma says she feels positive about Isabel’s consultant who is professional and warm. Mum’s overriding concern is to keep her daughter safe.

Isabel’s parents are in an uncomfortable position when they project towards the future, thinking of every eventuality to keep her safe (while remaining in the dark).

Worrying mother

I know I shouldn’t worry BUT…

Would I cope in their shoes? I’d be scared & hope my kid would grow out of it. I’d be fearful of it getting worse but fix to the idea that it’s mostly controlled and fatalities rare. Still, questions would rattle me, such anxieties being hard to tame.

Four-year-old Isabel seems unfazed by recent traumas, perfecting her tree climbing and paper plane throwing. Has she developed a new resilience from all the trials one wonders?  Her take it in your stride attitude helps ease the way for mum, dad and big sis.

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