Revisioning …

Cait is coming to terms with the return of her seizures. She’s getting over the disappointment and starting to make some adjustments to her game plan. It’s hard because she so desperately wanted the seizures to be gone. And after her video EEG was perfect (“absolutely beautiful” in her neurologist’s words) she really let herself begin to believe that she’d outgrown her epilepsy.

Up until the end of her hospitalization, Cait had said that she didn’t want to drive. She insisted that cars were scary and polluted the environment. But after such a positive outcome at the hospital she thought that maybe she would study for her driver’s license for January (her 16th birthday). She admitted to me that she’d even decided to save her money for a Westfalia (of course, my hippy daughter’s car of choice). But all that’s changed now. Especially since she’s decided to try her taper again as soon as her vacation is over in mid-July.

Making the decision to get off the medication is tough. The side effects of the seizure meds are horrid. And there is no “better” drug – they all have bad side effects. Changing drugs means getting rid of some of the current side effects but also encountering new ones. And there is no guarantee a different drug will control the seizures (Cait’s first epilepsy medication did not help at all). But to not take medication means a high risk of seizures.

Cait was relatively seizure free before puberty hit. But she’s been on medication ever since she turned 11. And her medication has controlled the seizures. Now she wants to be medication-free but that means a very real possibility of seizures. Cait’s decided that she’ll try it and see what happens.

On her first taper off the medication, she had 4 seizures pre-menstrually. Were they hormonally triggered? We don’t know. And we won’t know unless she starts the taper again and sees what happens next month. Research has shown that some women have catamenial epilepsy – which is directly related to the menstrual cycle. Does Cait have this? We don’t know. We were told when she went off medication at age 8 that she might have a return of her seizures when puberty hit (it’s very common) but because she has been on the medication since starting menstruation we don’t know if her regular cycle is a trigger for her seizures. To further complicate matters, her current epilepsy medication has the side effect of messing with one’s cycle (from irregular periods to extremely painful ones).

But Cait is convinced that her medication is making her sick. And she wants to go off it even if it means having seizures. She thinks she can manage the seizures and would rather deal with the occasional seizure than be on meds. Despite the bravado I can tell she is scared. And it breaks my heart that she has to make this kind of decision.

Beyond making these tough decisions and the fear of future seizures, is the disappointment that I can tell is crushing her. She has started to talk about it a wee bit. It’s the diving that is the most disappointing. She so hoped she would outgrow epilepsy so she could scuba dive. Today for the first time, she talked about maybe going into medicine instead of marine biology and she started asking where the best medical schools in the world were.

As a parent it’s hard to watch her go through this. But at the same time, this is really what life is about. We re-adjust and move beyond our disappointments as we grow. And I’m proud of her for being able to do this.

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