Early medical papers suggested the prognosis for children with MPEI was uniformly poor due to lack of ability to adequately control seizures.
We have found within the support group that this is not the case, and there seems to be considerable variability in the progression of this condition amongst affected individuals.
A few achieve seizure freedom and may have relatively few additional medical complications.
Others do not respond to conventional anticonvulsant medication and may 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.
It is true to say that developental progress of all children with MPEI will be slow, and to date no child with this condition has ever shown a completely normal development.
Early literature reported 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 more than 75% of children we are in contact with have reached the age of 2.
Within our group, most children's symptoms have tended to become severe by the age of 4. We are aware of 2 children having reached their teenage years and one of these children is still alive aged 16 and is in 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 at the moment, as the underlying cause is not believed to be the same for every child. We are only just beginning to understand the possible genetic causes of MPEI which we hope in time will lead to the development of effective treatments.
The progression and severity of this condition amongst children is almost certainly linked to the underlying genetic cause and therefore will vary between children. Early genetic diagnosis may help direct more effective tretaments in the future.