Tuesday, April 8, 2014

Mornings that turn into days

Rosie's on trileptal, a dual purpose anti-seizure and mood-stabilizing drug. It's worked better than anything else. She was on depakote for a long time - the only epilepsy drug that worked given that she didn't actually have epilepsy. And depakote is also an anti-seizure/mood-stabilizing drug.

She's had ups and downs over the past year, well swings actually, some more extreme than others, but lately, she's in a pit, the pit of despair. Yesterday, she woke up and was instantly set against going to school. Some days I know that I can push her- that I can make her go with the right bribes or calm negotiation. But there are days, and yesterday was one of them that I know that she was too fragile. Too fragile to handle the academic and social relationships of school. Her tears were real. Her fragility was palpable. And she screamed, "I just feel so much pressure, mom. You don't understand how much pressure I feel. "

When I tried to get at the source of the pressure she would just scream again, "I feel so much pressure - you don't understand. The pressure builds and builds and builds in my head and it feels like I'm going to explode. I want to die. I want to kill myself because I don't want to feel this pressure anymore. Don't you understand?"


We talked for a long time after that. She let me hold her and she cried. And I told her about my own depression and how sometimes I don't feel good about the world either. She spent the day on the couch watching TV and working on Legos and doing some homework. She had a low-grade fever all day. She always has a low-grade fever on days when she stays home from school. We talked to the psychiatrists, we've done blood tests, and no one knows why she doesn't feel good on her medicine. They think it's just some strange side effect, not toxic, but still affecting her in a way that makes her feel awful.

It's the second time in as many weeks that she's talked about killing herself. So, I called the doctor again and told her about the pressure that Rosie feels. I told the psychiatrist that she wants to kill herself and that she feels hopeless and more depressed than she has in the past few months.

So, last night we went to the drugstore and picked up Abilify, another atypical anti psychotic drug for her to try. She tried risperidone and had extrapyramidal symptoms, so we had to stop. She tried seroquel for two weeks, but she stopped eating completely, so she had to stop.  Today, she felt wormy (her words) and restless and her feet hurt. After only one dose of the new medication she's already starting to feel badly.

I thought that maybe it was just Monday, that she needed a slow start to the week. But now it seems, as I look to Wednesday morning, that she probably won't go for the rest of the week. This makes everything pretty difficult for the family. I can't teach my classes. It's hard to figure out Harper's schedule- when I can her pick her up and take her to all of her activities.  Every new medication means every day is different and it is utterly, inexorably exhausting. And my girl is only seven. There will be many days ahead and I'm not quite sure where that energy's gonna come from.


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