How do you feel when you discover that your child has epilepsy? Most parents are overwhelmed by all kinds of feelings: grief for their child, fears for his or her safety and doubts about their own ability to cope. It may feel as though the high hopes that you, like every parent, have for your child have been dashed. Anger is a common reaction: why did this have to happen to our family, to our child? You may even feel resentful at the disruptive effect the discovery has made on your own life and your own plans. And however irrational it is, you are very likely to feel guilty, as though the whole thing is somehow your fault, something that you should have been able to prevent.
These initial feelings are normal and natural, and you are likely to have them however much you love your child. Eventually they will lessen, especially if you have a doctor who is willing to answer your questions and give you the information and reassurance you need, and if as a couple you and your partner can help each other through this stage, sharing the worry and the responsibility.
It often helps to talk to other parents who have experienced what you are going through. Joining a support group can be very comforting and also a helpful and important source of information. The British Epilepsy Association (see Appendix) will be able to tell you if there is an epilepsy support group in your area.
*65\193\2*

convulsive status — prolonged tonic-clonic seizure

non-convulsive status — repeated myoclonic seizures

(non-convulsive means that — prolonged absence seizure

there are no jerks or abnormal — prolonged complex partial seizure

movements)

epilepsia partialis continua — continuous twitching of

one arm/leg

(this is rare) or one side of the face, or both.

The EEG is not usually helpful in convulsive status, but may be extremely valuable in

non-convulsive status. In this type of status, the diagnosis of epilepsy may not be immediately obvious. The patients may just appear confused or bewildered, with some inappropriate behaviour. An EEG recorded at this time will confirm the diagnosis.

Convulsive status epilepticus is a medical emergency which requires prompt treatment. When a convulsion is prolonged, or a patient does not recover fully between seizures there is a danger that a lack of an adequate oxygen supply to the brain may cause brain damage. There is also the risk of vomiting with aspiration of the vomit into the lungs. Although rare, patients may die in status epilepticus.

The longer the patient has been in status epilepticus, the harder it is to stop it.

Treatment consists of giving a fast-acting anti-epileptic drug as quickly as possible. This is usually given into a vein, or if this is difficult (which may be the case in young children), into the rectum. The most commonly used drug is diazepam (also called Valium, Diazemuls, or in a rectal tube preparation, Stesolid). Stesolid may be given by parents at home. This is useful as it means that treatment can be given early and before waiting for a doctor to arrive, or for the child to be taken to hospital. Other drugs that are sometimes used include lorazepam (Ativan), chlormethiazole (Heminevrin), and paraldehyde. This drug is usually given via the rectum but may, rarely be administered as an intramuscular injection into the buttocks. Paraldehyde is a very effective anticonvulsant but its main disadvantage is its unpleasant smell.

If the first dose of either diazepam, lorazepam, or paraldehyde does not terminate the status, then a second dose may be given. If this is not successful then the patient must be treated more urgently, and admitted to the intensive care unit. This is because the suppression of the seizure may require such considerable amounts of drugs that normal breathing may also be suppressed. In this situation, patients may require ventilator-assisted respiration, and intensive nursing. The longer-acting drugs which are most commonly used include phenytoin and phenobarbitone. They are usually given by a ‘drip’ intravenously to ensure that they work quickly. As the seizure comes under control, drugs can be given again by mouth.

Once the patient has recovered and is stable, any factors which may have caused the status epilepticus must be identified to try and prevent a recurrence. In many situations, this will involve a review of the usual oral anti-epileptic medication, and ensuring that patients take their medication regularly.

*68\188\2*