Thanks for the positive feed back re this blog, we are trying to keep it up to date without making it dull writing to often and with little information.
Sarah is really not herself, this past two weeks have been hard but not at her most difficult as not required hospital treatment.
So now it is clear Ethosuximide the anti-epileptic drug introduced a month ago is not stopping the seizures and yet giving horrible side effects.
We miss our lively interactive jolly wee girl, in her place we have a very clingy subdued tired girl, who needs even more care. Her night seizures have increased and seem to be longer and stronger UGH!!!!!
The day time ones are not gone either, so clearly this medicine is not working for Sarah.
Today as we discussed these changes with her epilepsy nurse, we all agreed it was time to take the anti epileptic drug out. This will be a vulnerable time again for Sarah, as we have never had a medicine yet that on withdrawal does not cause some sort of seizure problems.
Next plan will be to try another medicine as recommended by Great Ormond Stree
The new drug will be number 8 anti-epileptic drug now that Sarah has tried. Usually it is said that after trying the first two most appropriate anti-epileptic drugs and being unsuccessful then the probability is low to get one to work.
Its worse than a lottery (no we don't indulge ha ha!!)
It is three weeks since her drop seizure that caused Sarah to have a nasty head injury and we are so thankful that the drop seizures have not returned.
It is nerve wracking even thinking about them and the injury's that they can cause Sarah. It took us all time to get over such a fright and with Sarah having regular night seizures it is hard to catch up on energy levels!
It is nerve wracking even thinking about them and the injury's that they can cause Sarah. It took us all time to get over such a fright and with Sarah having regular night seizures it is hard to catch up on energy levels!
We are thankful for the overnight residential respite care in the week that gives us a break from Sarah’s demanding care routine. She is collected from school and so has the opportunity to be independent from us, having her ‘sleep over’ in Sarah’s words.
Pray for her withdrawal of ethosuximide, for her body coping with the steroids.
For Anna, Talitha and Elmarie in the midst of Sarah’s needs.
For all the children, in the care of St Clements, more on it in the next post.
Give thanks for the team of professionals that surround Sarah, we as a family are so grateful.
St Clements visits Sarah at hospital, see March 4th post.
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