Phoebe was almost four when she started “daydreaming”. The active, talkative girl would be in mid-sentence when she’d suddenly stop, stare into space for a few seconds, before continuing from where she’d left off.
Or she’d be halfway up the bus or in the midst of getting into the car when she’d stop, again for a few moments, before continuing.
Her mother, Patricia, says Phoebe’s frequent “daydreaming” frustrated her and her husband.
“There were times when we were really angry and upset with her,” says Patricia, a part-time teacher at an enrichment centre. “I would shout at her and she just wouldn’t respond.”
Even Phoebe’s preschool teacher commented on the “daydreaming”, bringing up an occasion when the girl simply wouldn’t board the school bus despite being shouted at to do so several times.
Says Patricia: “We really thought Phoebe was being naughty, so we always scolded her for not paying attention or listening to us.”
Up to 13 fits daily
However, the young child was neither naughty nor defiant. The frequent reprimands probably confused her, as she’d have no idea what she’d done wrong.
That’s because she suffers from a condition known as childhood absence epilepsy (CAE), where a seizure or fit causes brief loss of awareness.
It was something Patricia had never heard of, but the diagnosis immediately explained Phoebe’s regular “blank outs” – the staring into space for periods of up to 20 seconds.
Once Patricia became aware of the possibility, she began recording Phoebe’s episodes and discovered that her daughter would have up to 13 fits a day – maybe more.
Phoebe went to see a paediatric neurologist, who put her through an electroencephalogram. Two weeks later, the results confirmed their suspicions: Phoebe had CAE.
Early treatment for epilepsy
The diagnosis saddened and worried the Tays. Patricia also felt guilty for all the impatience she’d shown Phoebe and the scoldings she’d meted out. She now knows these actions were out of her child’s control.
At the same time, however, it brought relief that they now had answers and that the CAE had been detected early.
In fact, the neurologist was surprised to see a patient of Phoebe’s age. She shared that the illness very often goes undetected until the child enters formal education.
There, schoolwork suffers as a result of her constant “daydreaming” and her inability to follow a lesson or instruction.
Early detection in Phoebe’s case, however, meant that she received treatment promptly. The medication Epilim has improved her condition by leaps and bounds.
In fact, Phoebe no longer has fits, although the medication and dosage will have to be reviewed regularly as she grows up.
Still, while Patricia hopes it continues to work its magic, she admits to being fearful of any side effect.
Meanwhile, life goes on for Phoebe. She still doesn’t fully understand her condition because she’s totally unaware of the seizures when they hit, says Patricia.
“We’ve shown her Youtube videos of other children suffering from the illness and what happens when they blank out. But, other than that, it doesn’t affect her.”
On their part, the Tays have put in an effort to be more patient but refuse to treat her as someone who’s handicapped.
“We still expect her to have certain standards. If she’s performing at 80 per cent, we would like her to strive for 85 per cent,” adds Patricia.
There are activities that are off limits, though. One is gymnastics. The other is cheerleading, which Phoebe has recently asked if she could sign up for as a cocurricular activity.
But that’s a risk Patricia can’t take. “What if she has a seizure in the midst of a somersault?”
Like other parents, Patricia does worry about how the condition might affect Phoebe academically or if she’ll lose out to other children.
So far, though, those fears appear unfounded as her daughter has performed well in enrichment classes for maths, reading and Chinese.
And she’s just as active outside the classroom. Phoebe swims under close supervision, cycles with full protective gear on and loves ballet and tap-dancing.
Her form teacher has also been informed about her condition and the hospital has provided a letter explaining Phoebe’s illness. But, so far, she’s had no fits in school.
Her brother could have it too
One thing doctors have advised is that there is a possible genetic link and the couple should, therefore, look out for their son, Ashton, to see if he develops similar symptoms.
For now, the Tays have learnt to accept Phoebe’s condition.
Their main hope is that the condition will disappear when she is in her teens, as is sometimes the case for those with CAE.
“Whether she’ll outgrow it or not is still a mystery to us,” says Patricia.