December 2010 two weeks before Christmas we were back down in London at the National Young People’s Centre of Epilepsy for the three day video telemetry and full assessment carried out by specialist neuro consultants and senior specialist epileptic nurses and then tests run by Psychologists. Excellent facilities, great team of people.
We were given a report on the findings and a document now that will so help all the professions involved in Sarah’s care, and that is loads!
Sarah has indeed as Professor Cross identified Lennox Gastaut a very difficult and non curable epileptic syndrome, with poor prognosis. There is also abnormal brain activity that is not easy to diagnose and perhaps we will not ever get all the answers.
It is a relief to have answers as to why Sarah has such ongoing illness even after the trial of so many medicines.
We have been told it is a very difficult illness to manage due to the severity of seizure activity that will be on going and as yet no successful treatment.
Medically they seek the best treatment that gives a quality of life while trying to dampen the seizures and so slowing brain damage.
Frequently asked question
How do you and Ian cope?
Its simple we have a loving Heavenly Father who has gone before us and has promised to never leave us or forsake us, and all your prayers for us sustain us in all our cares.
How do you and Ian cope?
Its simple we have a loving Heavenly Father who has gone before us and has promised to never leave us or forsake us, and all your prayers for us sustain us in all our cares.
We now wait for our appointment with Professor Cross to go over Sarah’s eeg and her expert advice on what we will treat her very difficult non convulsive status with and we have so many things to ask her.
As this year closes we give thanks for so many answered prayers, Please remember our other three girls as they have so much to contend with coping with all Sarah’s demands on mum and dad.
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