An introduction to life after Reye’s syndrome

It is possible for the Reye’s syndrome survivor to recover completely with no after-effects or no apparent changes in the child. There may, however, be recovery with brain damage and disability ranging from very slight motor or learning disabilities to profound brain injury.

The same applies to the survivor of a Reye-like disorder but in addition the child will probably have a specific diagnosis of one of the inherited metabolic disorders which can mimic Reye’s syndrome, such as MCADD (Medium-chain acyl-CoA dehydrogenase deficiency), which will be with them life long.

The parents will have been counselled about the effects of this by the paediatrician or specialist metabolic nurse at the hospital where the diagnosis was made. Unlike Reye’s syndrome, there will be implications for diet, specific therapy and prevention of recurrent episodes of illness.

Are there lasting effects?

Survival is related to the severity of the cerebral oedema (brain swelling). Some patients recover completely. Others may sustain slight to severe permanent brain damage.

Patients surviving Reye’s syndrome require follow up, with developmental and neurological assessment.

Date of next review: December 2021