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Seizures may describe frequent jitteriness lasting seconds or mild fits which cause the limbs to twitch. These may do little more than startle the baby, occasionally causing crying and tend to happen more often when thechild is going into or coming out of sleep. They are called myoclonic jerks and are caused by an excess of electrical activity in the brain.

During severe seizures the body of the baby will be rigid and the limbs extend. Treatment consists of anti-convulsant medication and it can be difficult finding the correct dosage. Too much and the child becomes lethargic and unresponsive, too little and there may be an increase in the number and severity of the seizures. Seizures can be accompanied by apnoea and you will be taught the best way to look after your baby during a convulsion or an attack of apnoea.

Michael was born with holoprosencephaly and suffered from severe fits in his first few days. The drug Diazepam was used and later Phenarbarbitone; the dose was altered as and when necessary. These drugs were successful. We cared for him from 3 days old until he died and he never had any more fits.’

Our son suffered from severe epileptic fits and initially they gave us great cause for concern because he would stop breathing and require resuscitation. His seizures are now under control and he is very lively, possibly due to a reduction in his anti-epilepsy drugs.’

We were not told of the high incidence of seizures in children with Patau's syndrome. After one seizure John gave a larger than normal jump and within a few seconds his lips and nose turned blue. The rigidity receded but he did not start to breath so l gave him mouth to mouth resuscitation. After a few moments of this and massage, John gave a gasp and started breathing. At this stage he was still very blue and so we took him to the hospital where the paediatrician told us that his myoclonic jerks had progressed to epileptic seizures accompanied by apnoea spells. This was a traumatic time for us and others, like grandparents, who became nervous of handling John. After his third blue-light rush to hospital the paediatrician prepared us for the worst and said he didn't know if they would be able to control the attacks. We had to rethink our approach and our confidence was boosted when the paediatrician prescribed a rectal Diazepam to be given if John did not seem to be recovering from the first seizure. Our confidence grew when we used it for the first time and proved that it worked. Through time John responded better to his daily medication.’

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