In February 2003 while getting my three-year-old daughter
Courtney ready for bed she suddenly went limp, floppy and
unresponsive. I thought she was playing but after a few minutes she
had white bubbles lining her mouth. My panic instinct took over and
I rang the doctor. He said it was some kind of a seizure and not to
worry. But a few days later on the way home in the car it happened
again and she slumped over the handbrake. The accident and
emergency doctor confirmed it was a seizure and discharged her into
the care of a paediatrician.
While waiting for an appointment Courtney kept on having these
strange episodes. The longest took place last November when she
worried ambulance men so much that we had a very fast journey to
hospital. Courtney’s seizure lasted for 90 minutes and she did not
flinch when glucose tests and a venflon were put into her hand.
During other incidents she has slumped into a hot dinner almost
suffocating, fallen down the stairs and not cried or been
responsive, and she has walked into walls. She has no response to
pain or anything else during the seizures. The most worrying thing
is that she is at risk of harming herself.
These attacks show the same pattern. Speech is the first thing to
go and last to return and if standing she rocks. She does not shake
or go rigid, she is unaware of her surroundings and on one occasion
her skin went pale gray. One doctor detected eye movements, but
nobody else has. The seizures usually last more than 10 minutes. On
occasions her attacks are daily, sometimes numerous, and with no
Tests at hospital have revealed little, but we have had some
support. The occupational therapists have been fantastic and
arranged a much-needed buggy and car seat to support Courtney and
keep her safe. Initially her play school arranged a one-to-one
support worker for Courtney.
The paediatrician told us she was displaying self-gratification
behaviour. We were told that boys masturbated and Courtney had
seizures; daydreaming was another phrase they used. We do not
accept this as an explanation and are awaiting a second opinion.
The help she received at play school has now been withdrawn despite
my having to be within three minutes of her at all times.
These attacks totally exhaust Courtney and we shadow her constantly
as they have already had serious consequences. Until we get an
answer we are totally in the dark. We have been criticised for
searching for information on the internet about this and have been
labelled paranoid. We are told this is normal behaviour for a child
although it baffles everyone who witnesses these attacks. Courtney
has tantrums like every other three year old but these are not
tantrums. She has my undivided attention. Although not
life-threatening in themselves these attacks of “day-dreaming” hold
serious consequences for Courtney.
Mel Rawding is the mother of three children with special