This year started with Sarah continuing to be troubled with Non convulsive status (where the brain goes into non stop epileptic seizure activity but not outwardly convulsing)
This is very distressing as Sarah loses the ability to talk, walk, eat and drink and so results in being admitted to hospital for IV drugs to stop the brain seizing.
This is very distressing as Sarah loses the ability to talk, walk, eat and drink and so results in being admitted to hospital for IV drugs to stop the brain seizing.
Night seizures have been strong and frequent so we are ever thankful for the two nights our nurses come in, and Ian and I get an non interrupted sleep.
School for Sarah is a great help where they have learnt to manage her at almost all levels of seizure activity.
Her wheel chair is a great help when she is not mobile and so can still be included in the activities of the day.
Her schooling has been so interrupted and managing a full week has not always been achieved.
Sarah continues to be unstable and we continue to juggle her worse spells with clobazam.
We await a second opinion referral to Great Ormond Street Hospital.
We watch Sarah struggle so much and before we move to try another AED or other therapy we are looking for a second opinion.
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