Thursday, November 18, 2010

When The Meds Don't Work

     B has had a horrible time of it lately. Her seizures are quite bad lately. On Monday she had three. Is the new med not working? Or just not yet? I don't know. She's having a lot of trouble cognitively. She can't follow the plots of cartoons and she's struggling to put sentences together. Her normally bad memory has taken a nose dive. This has led to high frustration and temper tantrums, which she doesn't normally have, because it's really hard when you don't know what's happening most of the time.
     Today we got squeezed in at the neurologist's. The increase in seizures as well as her emotional and cognitive problems are a cause for concern. For now, we will stay on the schedule for the medication.
     I REALLY hope it starts to work, because her neurologist feels like it's time she was assessed for brain surgery, where they will likely remove part of her brain. I really don't want that. But the meds don't work. But the surgery isn't a guarantee. But the meds might work, for awhile. But maybe they won't for the long term. But the surgery is dangerous. But the seizures are stealing her life.
     Apparently children that have tried two or three drugs for seizures that haven't worked are candidates for surgery. B has been on six.
     You know, it feels really weird to have normal interactions with people when you have just been told such things. A little while ago I went to cash a cheque, and I promised B some pizza. They wouldn't cash it because it's a day earlier then the cheque is dated, even though they have the last two months. It's perfectly reasonable, but I became instantly and profoundly depressed that I couldn't buy her pizza. She doesn't remember I said I would, and we have tons of food at home, but I just felt really sad. And now I'll have to go tomorrow and see if the teller thought I was being rude.

1 comment:

  1. Is it possible that her seizures are feeding off of her emotions? I don't know what her triggers are, but one of mine is definitely emotional stress.

    Has anyone discussed a VNS system with you? It's much less invasive than brain surgery and might be useful to her, especially if she can feel the seizures coming on and is able to trigger the stimulator with the magnet.