Three more seizures. That brings Cait’s total to 8 since the end of June. But she’s determined to keep tapering off her meds. The last 4 seizures have been nocturnal, meaning they happen when she’s sleeping and we probably wouldn’t be aware of them except it’s summer – so that means more camping opportunities when we’ve been sharing sleeping space.
Last night we weren’t camping. Cait felt as if she’d had a seizure the previous night. Then we went to a 3D movie. She switched seats to be by me just in case the 3D effects triggered anything. And she didn’t tell me the movie made her feel a bit off … at least not until this afternoon.
She does that. Keeps it to herself and then slowly tells you the details when she’s ready. She told me this morning that she knew she was going to have seizures last night. I wondered why she asked to sleep with me – but her cousins were staying over and I thought she was maybe just tired. But she knew something was up. She said she thought it would be better for her 6-year old cousin not to see her if she was having a seizure.
And today we have the aftermath. She had just celebrated her 3 weeks of being seizure free with her EA Squad friends and ice cream. Now she’s back to zero days of being seizure free. But she’s optimistic as always. It’s no big deal, she insists with a smile. I would be upset if I were in her shoes but she says she’s not.
But this morning she agreed to adjust her packed fall schedule. She’s dropping her early morning courses that are outside the timetable and we are meeting with the school counselor to see what can be done about her academic schedule. And she’s finally agreed to the chronic illness designation, something she’s refused multiple times in the past insisting she doesn’t need it.
This afternoon she asked me to come into the bedroom and read with her. I knew she was tired and I think she’s scared of having more seizures. She’s been sleeping now for 3 hours, recovering. Next week we drop her meds another 25mg. She still is insistent she’d rather try to get off the medication and have the occasional seizure rather than deal with side effects. So I have to respect that and support her in that decision. It’s her body and she’s getting much better at listening to what it’s telling her.
Still as a parent, I remember what happened when she was six years old. I remember how terrifying it was when she seized for 12 hours and was hospitalized and drugged into sleep. And I worry with her having breakthrough seizures already what the coming months are going to bring. I think deep down she’s a bit worried, too. She started talking the other day about SUDEP (Sudden Unexpected Death in Epilepsy). And she’s now wearing her MedicAlert bracelet all the time.
But if she is worried she doesn’t let it show. She just smiles and tells me to relax. “It’s going to be okay.” She says. And I have to believe she’s right.