Sarah over the last weekend has had a build up of stronger and longer lasting
tonic clonics in her sleep.
Today she woke up in Non-convulsive status(NCS). This is where she is extremely
wobbly unable to co ordinate her movements, unable to speak without slurring her
words and so its difficult to understand her. She is unable to hold her head up
much and is in what looks like a drunk stupor. It is caused by non stop seizure
activity going on all over the brain.
We took her to hospital where we would have hoped her bloods would reveal
her medicine levels would be low in her bloods and an IV infusion would boost
her. But unfortunately not, her levels were good suggesting that these seizures
have appeared again after a year and without reason we had to look at using
rescue medicines. We are very anxious about this as most of the rescue medicines
are addictive and cause seizure activity on withdrawing them! Also Sarah in the
past has regularly experienced horrible side effects mainly poor behaviour and
poor concentration and deterioration in cognitive learning.
We have experienced such freedom from all this for over a year it seems
so hard to be going back wards again.
I have got a dental appointment tomorrow for her as she has been
complaining about a sore tooth we are aware her epilepsy can be triggered by
pain?
Also Sarah has been more active as she has been so well.
It is also a reminder her condition is a difficult one and we would value
your prayers at this time an ongoing that she would not remain in NCS and that the rescue
medicine would be short term and without side effects.
will keep you posted
Thank you for your care and prayers.
