Seasons and SeizuresTags: HopeforHH.org, hypothalamic hamartoma, Living with Hypothalamic Hamartoma, medication changes
What triggers Ezri's seizure activity? What is it that causes her to have a string of bad days in a row and then things suddenly get better? Aren't those the million dollar questions for HH? I guess if the parents and doctors knew then we could keep general baseline seizure activity to its minimum. But no matter how hard I try to pinpoint something, anything, that causes a significant impact on seizures, I can't. About a month ago, we took Ezri off the Vimpat she'd been on for almost a year. The change in seizure medication definitely stirred up more crying/irritability episodes for a few days and then, starting that on that really great day at the beach (when she'd been off Vimpat about a week), Ezri started doing generally pretty well. After 2 weeks off the Vimpat and letting things regulate, we tried an anxiety medication called Buspar (as an add-on to the Lexapro to help reduce the anxiety associated with the crying spells and also not in the 'benzo' family of medications b/c they always end up increasing Ezri's seizures). Buspar lasted two days before Ben and I both decided this was not to be given to her anymore - it significantly increased Ezri's 'episodes' - and since that trial, we have only been on Lexapro and Keppra and doing fairly well overall. This is not to say that the Vimpat was bad for Ezri and that it was causing increased seizure activity - Ezri had two really great periods, one in the early fall of 2011 and one in early 2012, each lasting about 2 months while taking Vimpat - it just goes to show how elusive the answer is to what causes increases in seizures for HH patients. Sure, when Ezri doesn't get enough sleep or she gets a bad cold or is generally overstressed, she is frequently visited by an increase in seizure activity (more crying outbursts over tiny little things as well as more staring spells and a general cognitively spaceiness), however any of these things can be occurring without causing an increase in seizure activity - it just depends on the day or period. One thing I have noticed is that certain times of the year *seem* to be falling into a pattern of doing relatively better or worse (that remains regardless of surgeries). January, February, and even March have been classically 'good' months for Ezri with us seeing less seizure activity than normal and more cognitive progress, but then through April things seem to start falling apart. I'm really starting to wonder if there's something about 'spring fever' that affects even seizure activity as everyone seems to go a little crazy during this time of the year. This 'worse' pattern seems to last through early/mid summer with a better period following it (we started Vimpat in August of last year...). The 'better' period lasts a few months and then when the cold of fall and winter starts setting in, things start falling apart again for awhile. Maybe it really is the seasons or the change of weather? For now, I can't say anything for sure, but I do know that I'm glad for the recent 'upswing.' The last couple of days Ezri had seemed so relatively normal with her seizure type upset episodes being because of things that any normal kid would have been upset over (and I'll probably jinx her with a whole slew of worse days by saying this!), and it has been so refreshingly wonderful for her, for me, and the entire family.