One aspect of Angelman Syndrome is that it causes seizures. We were told that epilepsy usually starts in AS children between 18 months and two years of age and may initially happen with high temperatures (febrile convulsions). However, most of the seizures happen without a fever. Eventually seizures will happen in seven or eight out of every 10 children who have Angelman syndrome. We have no idea at this point if
The types of seizures AS children could suffer include myoclonic (“jerks”), atonic or astatic (“drops”) and tonic (“stiffening”) seizures, although they say, generalised tonic-clonic seizures are less common. Children may also have very prolonged periods of absences that last many minutes or even hours and this is called ‘non-convulsive status epilepticus’.
There are so many aspects of AS that scares us as a family – but watching Lily suffer seizures isn’t an option.
At this stage we have no idea if Lily will develop epilepsy, but I do know that we aren’t going to lose these precious years doing nothing, letting precious time pass Lily without trying to find ways to re-establish her developmental milestones and avoid epilepsy.
We are currently researching the Keto Diet, as a means to develop Lily’s brain, in the desire to avoid seizures from starting in the first instance.
healingangelmansyndrome 