Two months into 2013 already

2013 began for Sarah on rather a poorer health note!

Last summer we had a fantastic holiday to Romania; when as a family we were able to travel and have fun in the sun all together!

Sarah coped very well.  It is a bigger challenge taking Sarah on travels now but one we longed to do and she kept well untill the last day of it.

The months since the holiday have been similar to what she went through before Spring 2011 in that Sarah has again consistent periods of Non Convulsive Status(NCS) seizures.
The difference in the 1+ years without NCS for Sarah was great, as she learnt more in this period and was all the more brighter and physically steady and independant. We all benifited from this remission spell.
Sarah was then able to sleep alone more, and our night nurse finished to let her be in her own room and Ian and I began to get good sleeps!
 
What’s changed?  Well she has started to take longer and stronger and more frequent night seizures (she was never completely free from having the odd night seizure but short ones!).  As they increased we began to see the NCS creep back into the picture. This is a particularly difficuilt type of seizure as it stops Sarah functioning normaly, her speech goes her head droops and she is very very unsteady or unable to co ordinate herself. We need to assist her with everything.  The periods of NCS have become more and more frequent and as in the past there is not a medication that stops it, apart from a little clobazam which is strong drug that also affects her behaviour badly!  Clobozam is an addictive drug and the more you have it in your system the more you need of it to work and the more you have of it the worse the behaviour becomes!! Its a very short term answer with no long term beneifit!

At the moment we are using this drug to give her a period of relief however the gap has become shorter. Since the last two months getting a spell of only 5 good days without the NCS seizures.

Our neurologist switched the times she took her anti epileptic medicine Phenotyn around in November 2012 in the hope it would improve things; however we are not seeing any change.  Now the neurologist wants to see if the tablet form of the medicine Phenotyn, that was working, rather than the liquid form of it will work better.

It is very difficuilt to go backwards after such a good spell for all of us. We see how Sarah herself notices her seizures much more having been free off them and this is hard she really does try hard to keep going admidst her wobbles and sore heads!

Thanks for sharing in keeping up with how Sarah is getting on and thank you for your ongoing prayers we will post how she is getting on in the Spring of 2013.