Longterm Outlook

Tragically, the prognosis for children with MPEI is usually poor.

This is because the seizures rarely come under control for more than a few days or a week at a time. Sometimes they are never controlled. This means that they continue to happen every day.

Even for the lucky few that achieve seizure freedom, there may be little or no developmental progress and no child with this condition has ever shown a completely normal development.

Children with this condition tend to experience a number of other severe health complications which inevitably cause distress for the child and all around them. Problems tend to increase with age and progression of the condition.

Literature reports that there is a 50% chance of a baby diagnosed with MPEI reaching 2 years old, however within our group in the last few years we believe this figure to be pessimistic and have noted that approximately 75% of children we are in contact with have reached the age of 2.

Within our group, in most children's symptoms have tended to become severe by the age of 4 and only two children in our group have passed the age of 6.
Despite this, the two children referred to above (born in 2001) are of generally good health despite their underlying disabilities.

Management of this syndrome is principally one of "symptom control" in an attempt to keep the child's quality of life as comfortable and free from pain as possible.

There is no "cure" for this condition as the underlying cause is not believed to be the same for every child and at present no underling genetic defect has been discovered for any case of MPEI.
The progression and severity of this condition amongst children is almost certainly linked to the underlying cause and therefore will vary between children.

Despite this disorder being one of irretractable seizures, the cause of death in the children in our group has not been as a direct result of seizure activity. (SUDEP)

Gradual deterioration has been seen in most cases, and has either followed a prolonged bout of pneumonia/chronic chest infection or has been a result of a gradual intolerance to feeds, leading to total gut and stomach failure.