I won’t let drugs calm my child’s seizures
Daily Mail Sept 21, 1999
When it was revealed recently that the drugs prescribed to an epileptic for 20 years had robbed him of his ability to function normally, thousands of epileptics feared that the same drug, Epilin, could be harming them, too. But many sufferers prefer not to rely on drugs. Here, ANNE McHARDY reveals why she has controversially refused medication for her epileptic daughter...
THE WORLD fell apart for my family at 11.3Oam on December 4 last year. My daughter’s school nurse rang me on my mobile. ‘Katy has had a fit,’ she said. ‘I would say epileptic.’
Some shocks leave you numb. This one, although I had no real understanding of what was happening, dissolved me into tears.
Katy then 12, Is the youngest of our four children. Life since, for all six of us, has been constrained by the agony of our debate about treatment.
That debate intensified recently with the heart-stopping story of Nick Pierce, presumed a slow learner because of a severe reaction to a common anti-convulsant drug, Epilin.
Nick started to reveal his true intellect when Walton Hospital In Merseyside took him off it after 20 years. He says: ‘I feel reborn.’
After her first fit, my husband took
Katy to Whittington Hospital, the nearest to her North London school We have no family history of epilepsy.
Solitary fits are common, the doctors told us, and even a GP friend suggested that she just needed regular rest.
But on New Year’s Eve, Katy returned from a sleepover and joined her brother watching TV Within minutes, he yelled. I ran in and found Katy shaking uncontrollably. She opened her eyes, smiled and said:
‘Mum, I didn’t know you were here.’ Then she started to fit again.
I rang casualty ‘Bring her In only If she has another fit,’ they said. I made a frantic round of phone calls: our Gp the Epilepsy Society helpline and the hospital. They all said to let her sleep. After the Bank Holiday, the paediatrician at the Whittington referred Katy for a brain scan. She said reassuringly: ‘We are all allowed two fits.’ Test results showed no Irregularity Indicating a continuous epileptic condition, and the paediatrician said no treatment was needed.
However, the previous week Katy had broken a wrist In PE and we went from paediatrics to the fracture clinic. Afterthree hours there, Katy had a fit.
We knew by then that one In 120 children between 12 and 15 has some epilepsy. One-third recover fully. We knew there are many forms of fit and that there is a widespread erroneous belief that modern drugs can always control them.
The paediatrician then wrote a prescription. ‘We will keep her on this for a year, then reduce gradually,’ she said. They would do more tests only if fits continued.
At home I read the contra-Indications and realised that, since Katy had a cold, she was already suffering several. ‘Wait until the cold is over’
the paediatrician said.
‘We re-read the information. The drug was used, it said, in 400mg doses as an anti-depressant. It could be mood-altering and might slow reactions.
We have a daughter full of laughter.
We did not want her mood altered or her learning disrupted.
Katy started having occasional seizures during which she was conscious but paralysed. The paediatrician suspected panic. Since fear was a trigger, she said drugs might be important as a palliative.
We sent for Epilepsy Society literature and began looking for other options. We saw a homeopath and had Katy tested for food Intolerances.
She reacted against a huge range, Including citric acid and lactose.
The paediatrician was sceptical. She said she knew of no link between diet and epilepsy.
Katy started the food regime and a homeopathic remedy, and we began’ a nightmare three months during which she had daily minor seizures some quite violent.
Her wrist failed to heal and we reset under anaesthetic. Pain triggered fits. Her school said to stay away until the plaster was off.
GRADUALLY the fits reduced. In May she had two weeks without a fit, and we started to hope. Then, on May 17, her 13th birthday she sat on our bed to open presents and just fell Into the wrapping paper.
Since then she has had a grand mal fit every two weeks and an Irregular pattern of petit mals most days. Occasional clear weeks let us hope.
Katy is now undergoing tests at Kings College Hospital, including looking at her sleep pattern. The consultant Is certain he can prescribe a drug geared to her seizures. Until tests are complete, he has agreed that she should continue drug-free.
Katy’s friends are fantastic. One collected her to restart school, and she has an epileptic teacher who proves that normal life is possible. Listening to Nick Pierce increased our fears but reassured us that we have to try every avenue of investigation.
Every day we worry that if Katy was on a drug, she would be fit-free. When we can be sure, she will use drugs. Meanwhile, we suffer the concern of friends who ask: ‘Are you getting her treatment yet?’