Hunter has been recently diagnosed with Otahara Syndrome, very scary for us because when we read up on it we see many similarities.
Here is the hard to swallow Prognosis:
- Prognosis is poor with severe psychomotor retardation and significant learning difficulties.
- The seizures are very often intractable and resistant to antiepileptic therapy making control difficult.
- Frequently cases will progress to West syndrome or partial epilepsy (usually during infancy). Later a much smaller number progress to Lennox-Gastaut syndrome. Psychomotor development may be slightly better if the infants do not develop West or Lennox-Gastaut syndrome
- Half of the children are likely to die in infancy or childhood.
- Some children who survive early children will often see a general improvement beyond initial expectations and increased life expectancy.
For now we are still in Holland and will stay there as long as God will let us.
Nick & Samantha Isaacson