The last two days Sarah has just been going slowly into more and more seizure activity. Her new medicine has dulled her quite a lot and she has been so quiet and unresponsive.
Yesterday her seizures began to lead her back into her non convulsive state(NCS), she had quite a few prolonged seizures through the night.
We had a review of her treatment with the consultant epilepsy nurse and the Neurologist.
Her new medicine is now on board for two weeks. Although not yet stopping her atypical absence seizures it has not reached its full dose and so must keep increasing until its at its prescribed dose. This is hard as the side effects are showing more than any help at this stage!
As she was in a state of seizures yesterday it was agreed to commence a 6 week course of steroids.
This has been seen to help in very difficult cases of epilepsy and was recommended by Dr Cross in Great Ormond Street
to try and give Sarah a rest from these difficult periods of NCS, while the anti epileptic medicine takes effect.
This has been seen to help in very difficult cases of epilepsy and was recommended by Dr Cross in Great Ormond Street
to try and give Sarah a rest from these difficult periods of NCS, while the anti epileptic medicine takes effect.
As the non convulsive status was present again another IV dose was given of a rescue medicine.
At 6.30pm this evening Sarah's observations changed and there was some concern as to why her pupils were differing sizes.
She had to be taken for another CT scan to make sure this was not anything connected to her head knock last weekend.
She had to be taken for another CT scan to make sure this was not anything connected to her head knock last weekend.
After another Anaesthetic and a worrying wait we were reassured that the CT scan was not worrying.
It has been a difficult week and one filled with sadness as the reality of Sarah's condition hits us as a family once again.
The instability of seizure activity, the reality of serious injury from seizures and the effects of the strong medicines that she is on and how they can so effect her wee personality and so we have to try to balance quality of life against freedom from seizures.
It has also been a difficult and tiring week for her sisters as we try and keep there routines normal, amidst being in and out of hospital.
The hospital staff have been so caring.
Thank-you so much for all your kind and good wishes and be encouraged God is answering your prayers. We feel upheld.
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