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Epilepsy Association of Western Australia (Inc.)

 Annual General Meeting Thursday October 30^th 2008 @ 6.00pm

17th Annual Epilepsy Seminar

Annual Audit 2008

 www.epilepsy.org.au

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Her son Romeo has Epilepsy

Intellectual Disability and Epilepsy

Intellectual disability refers to a substantial limitation in intellectual functioning compared to people of the same age in the same situation. In considering intellectual disability a range of personal skills and capabilities are taken into account. With appropriate support, the life functioning of a person with such a disability will generally improve.

 

Intellectual disability caused by brain injury due to such events as a difficult delivery at birth, a road accident or meningitis may be complicated by epilepsy. Intellectual disability caused by conditions such as inherited metabolic disorders may be complicated by epilepsy. There are other conditions such as tuberous sclerosis where epilepsy and intellectual disability are part of the disorder in which there are structural abnormalities of the brain. Frequently, however, the cause of both the intellectual disability and the epilepsy are not known.

Very rarely the answer is 'yes', but in most cases it is correct to think of the two disorders existing side by side, neither one causing the other.

It is rare for absence seizures to occur in people with an intellectual disability. Partial seizures are usually the result of limited control by medication and best regarded as modified major seizures. Complex partial seizures do occur but may be difficult to diagnose because of the lack of a description of the person's feelings. Generally, tonic-clonic seizures are more common. Atonic and myoclonic seizures may also occur. An individual may experience several types of seizures.
 

This may be difficult to assess with the more disabled person, especially if there is no speech or if the person has little sense of awareness.

 

Treatment of the intellectually disabled person with epilepsy by medication should be subject to the same precautions that are applied to anyone with epilepsy. However, it must be emphasised that children with moderate or severe disabilities, and those with neurological deficits such as spastic cerebral palsy, tend to develop troublesome side effects, particularly abnormal overactivity and irritability when treated with some antiepileptic medications. Those medications that are free of undesirable intellectual or cosmetic side effects are best.

Unfortunately, there is often the feeling that seizures are difficult to control in people with intellectual disabilities. Over-sedation, prescribing too many drugs at a time and insufficient review are risks to which those with intellectual disabilities are sometimes exposed.

 

As the years go by, there often appears to be deterioration in the level of intellect. There are several reasons for this:
· The deterioration is caused by inappropriate and/or too much medication, which has a sedating, effect.
· The person's lifestyle has been so restricted and so little is expected of them that the person is frustrated and "opts out".
· The person's seizures are causing additional damage to the brain. This is rare but may occur in some children with infantile spasms and myoclonic epilepsies or in people prone to status epilepticus [continuous or repeated seizures].
· The person has one of the rare degenerative diseases that causes dementia [a loss of intellect] and epilepsy.
A medical history and investigations will reveal which of these factors are relevant.
 

There is often a change in the pattern of epilepsy, irrespective of medical management. There may be a quiescent period in late childhood with a return to seizures in adolescence and then easier control in adulthood. However, such changes with age are not predictable.

 

Every situation is different and medical advice should be sought. The decision will depend on the extent of seizure control, timing of seizures and judgement and perception of the risks. Some unobtrusive extra supervision is probably all that is necessary, particularly with regard to water sports.

 

This varies, but those caring for the person will notice that perhaps tiredness, boredom, stress, hunger, excessive noise, television, discos or great excitement and even constipation may play part. A person's lifestyle can be adjusted, but do not separate them from others; do not expect less from them or exclude them from activities they most enjoy.

 

Any reduction in medication must be discussed with and supervised by a doctor. There is a risk of a seizure "breaking through" and so the timing of any reduction should not coincide with another major life change. However, it is wrong for the person to stay on medication for years simply because they have an intellectual disability.

 

There are three reliable ways of judging the adequacy of medication: careful monitoring of the seizures, observation for side effects and the measurement of the amount of the medicine in the blood. Some side effects are subjective – feeling nauseated, drowsy or unsteady – and if the person with the intellectual disability cannot report these adequately, then both the seizure frequency and the blood tests become all the more important as guides to effective medication.

Open employment may be a possibility for some people with intellectual disabilities. For others there is a range of options such as independent living skills programs, vocational training and supported employment programs. The person may need to be assessed by an experienced worker from the field of disability who can recommend the most appropriate course of action. Referrals to such workers may be obtained through your local epilepsy association.