Easter 2011

Easter 2011

Easter Friday arrived and six weeks since Sarah was last in Hospital.  Sarah completed her six week steroid course with no magic seizure control but at least Sarah was given an appetite boost and a little weight gain.

Her broken ankle healed and plaster off before we started our holidays in early April.

Ethosuximide had to be discontinued as Sarah had no benefit from it and awful side effects like loosing speech and poor appetite.

We took off for a holiday to the West, Sarah was having a lot of seizure activity but as the steroids were enabling her to eat and drink we were determined to keep her going. This we did as we had picnics and paddling on a beach on Skye. Went on a few trips swimming, took a trip to Applecross and climbed the famous ‘Sand’ dunes. Sarah with the help of dad and her uncle reached the top, much to her delight!

Collected crabs on the shores at Arnisdale, had dinners at grannies and lots of play at her cousins, it was great weather and we all benefited from being away from home and hospital!

Sarah had to return home the second week of the holidays as she had a week of appointments.

Tuesday 19th was her Neurology clinic where our neurologist  confirmed on seeing Sarah that she was in NCS all be it high functioning but a clear indicator the steroids were not stopping it as hoped.  Steriods are now being weaned and Sarah was started on Phenytoin. This state of Non Convulsive Status (NCS)has troubled Sarah for such a long time now and only IV  Phenytoin takes her out of it at least short term so for this reason Dr Jollands has now prescribed it as a daily oral dose.

We also discussed the recommendation for Sarah to have a full clinical psychology assessment done at the NCYPE that diagnosed Sarah last December. Dr Jollands will refer her and we will have to wait and see if our local NHS trust will fund this.

Sarah had a lovely day out with her respite carers on Saturday to Nairn beach we heard all about the walk the bus and the chips!!

Easter Saturday night she had a lot of seizures through the night and Easter Sunday she was very wobbly. Easter Sunday night through till Easter Monday morning she had had seizures every hour.  We have had seizure activity through the night all holiday some nights more than others, however she seemed to be having more.

To our surprise Easter Monday 25th she woke eager to eat breakfast and seemed fairly bright.

However late morning Sarah started to have short tonic seizures where they were happening every 5 minutes and after lunch time we had to get an ambulance to take her to hospital by which time she was then having them just 3 minutes apart.

IV medicines were given to stop the seizure activity and tonight she is settled and we pray she will not go back into them overnight or early morning.