‘The spasms caused development delay’

Joanne Silk’s daughter, Emilie, was diagnosed with epilepsy as a
baby. She talks about how that diagnosis has affected their lives
over the last seven years

“Emilie is our third child – she has two older brothers and a
younger sister – and her epilepsy began with the infantile spasms,
which first appeared during a family holiday to Spain in 1997 when
she was three-and-a-half-months-old. Her movements were very uneven
and then they worsened and became quite fierce. It started to dawn
on me that this was quite serious.

Back home, she was admitted to hospital where she was put on a
course of drugs which were followed by a course of steroids. This
meant we had to inject her every day and make a daily trip to
hospital – it was horrendous. The drugs caused some unpleasant
side-effects, but they did stop the spasms.

Unfortunately, the infantile spasms caused severe developmental
delay and she now functions at the level of a three-year-old,
although she has made tremendous progress in many areas.

Emilie is seven now and her epilepsy is unpredictable. We started
to try and reduce the drugs when she was three but she started
having generalised epilepsy, and we haven’t got it under control

She doesn’t lose consciousness but she ‘spaces out’ for a while.
Her limbs will turn to jelly and her arms and legs may go into
spasm. Sometimes she has two fits a week, sometimes two a day. The
trouble is you never know when it’s coming.

She started school in a mainstream school, but the support she
needed just wasn’t there. She’s been at a special needs school for
the last 18 months and things are much better.

Her brothers and sister cope really well with her condition and
they are really caring and protective of her, but I know it is
tough for them when, for example, days out are cancelled because
Emilie has had a seizure.

The worst thing has been seeing her development so delayed as a
result of her condition. Our main worry is what’s going to happen
to her as she gets older. Is she going to be able to cope or is she
going to need full time care?

We’d like to see more done to raise awareness about epilepsy in
children – most people don’t know enough about the support families
need and would not recognise when a child is having a seizure.
Support is really important but often you have to go out looking
for it rather than it coming to you.”

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