Sunday, October 19, 2008

Better Days, Worse Nights

After being on the ethosuximide for the past 10 days or so, it's really difficult to say if it's helping or hurting. Some days we seem to see a lot less seizures, as in today. I've personally only seen 2 or 3, but I haven't been staring at her all day waiting for something to happen. Other days, it's a wash as to whether she is having less or not. It's just hard to tell. The upside is that Mira is doing better during the day than she was on the Keppra or Depakote, although nights are another story.

Last night she was up for several hours just crying and screaming. There is little we can do to calm her down when she is on a roll - she is just inconsolable. There is always a correlation between her appetite and her poor sleeping. Yesterday, she wouldn't eat a bite at breakfast, lunch or dinner. She finally came around at lunch today and ate a decent meal. Tonight as I am writing, she is still having a tough time winding down and is crying and fussing herself to sleep.

One of things Mira has been enjoying of late is her globe toy. She has had it for ages (she actually has a spare one thanks to her former vision therapist who snagged another one for her on eBay) and has always enjoyed playing with it. Lately, she has been getting extremely intense with it, banging and smacking it so hard I think she is going to pulverize it into a thousand pieces. She will go for 45 minute stretches just beating it into submission until she is exhausted. She then sneaks in a 10 minute catnap in her chair, then lights it up for another half hour. She never gets tired of it.

Mira's orthotics (AFOs) came in last week and she had them fitted and adjusted at Children's Mercy. She will probably wear them for an hour a day, mainly during therapy. They should last a little less than a year.

We are still waiting to hear back on her bed at the moment. I called the beginning of October and they told me it was was going to be another 6-8 weeks before insurance will process it. This doesn't mean they will even approve it. If they deny it, we may have to appeal or go another route. I'm not sure why it takes so long - more insurance red tape I suppose. In the meantime, Mira keeps trying to sit up in her crib, which often results in her banging her head into the rails when she launches forward. She is just getting to big and too mobile for it to make sense for her.

The plan for now is to hold steady on the medication fromt. Mira has some room to go up on the ethosuximide, so we are optimistic at this point that it will help in some capacity. She is currently on about 30mg/kg and can in theory go up to 60mg/kg. We are taking it week by week, as usual.


Tisha said...

Love the pics - so sorry for the loooong nights! Big hugs to you all!

Lisa said...

Mira sounds like Kali with the screaming and sleepless nights.. We have been trying to find anything to help Kali!
We have been trying Neuron-tin at night for sleep & it has helped some.

good luck,

Lisa & Kali