Improvements with Zonisamide
Tags: hypothalamic hamartoma
This is the name of the new medication Faith is on and has been on for about four months. We had a few years without medication as nothing was making any difference to her seizures and she seemed to have more side effects than good effects to the previous medication. Then as mentioned in previous blogs, she developed these new seizures whereby her head would turn to the side and she was unresponsive for a few minutes.
Around this time also, school had seen a big drop in her understanding and ability to retain information so that her school work was suffering. I had started to consider sending her to a special unit and leaving the mainstream setting.
We started Zonisamide in November. As with most medications over here in the UK, it was fairly new to our hospital pharmacy, so initially we had to wait for approval and policies to be written and agreed. But since she has started it, her new seizures have, dare I say it, gone, and her usual gelastic, partial complex have reduced, though occasionally when she does have one it can be a longer one, lasting few minutes. But still she’s gone from having them every 1-2 hrs to 2-3 a day.
There was one blip last week in school, where she had a nasty seizure, involving her turning her head , being unresponsive and losing her colour. When the teacher told me I was gutted thinking oh no, here we go again. But thank goodness up to now that was it and there have been no more blips. Though it did worry me and I’ve contacted my consultant who has assured me that if we should have any further sign off the new seizures we can in fact up her medication.
As well as the fantastic change in seizures, we have seen an amazing change in her school work. At the last statementing meeting the teacher stated how much she had come on and seemed to be taking so much more in, even though still being behind her friends. But who cares, she seems so much more alive and eager to do things. Normally, it’s difficult to get Faith to take part in any family activity, such as going for a bike ride or taking the dog for a walk, but she has even been eager to do these things at the weekends.
I'd like to say that her rages were improved and actually initially they were, but over the last few days we have seen an increase in rages and anxiety again, becoming obsessed with the smallest thing. Hopefully this is not a sign of a return of anything else.