Monday, October 27, 2008

Still Crying

Mira has been fussing in her bed for the last hour off and on. Her crabby episodes at night are becoming very routine, unfortunately. I have no idea what to do for her. Any suggestions would most appreciated!!!

Sunday, October 26, 2008

Bad Nights Continue

I don't know whether it's the increase in medications or what, but Mira's nights continue to be pretty rough as of late. Last night she was up for hours and just could not find her happy place to calm down. She just screams and cries. During the day, she tends to have her moments in terms of being fussy, but it's her sleep that is really erratic. She has been taking some power naps throughout the day to make up for it, but I really don't think she is getting enough sleep overall since she is up so much during the evening.

We increased her meds to 3ml twice daily on the ethosuximide last week and I suppose we are seeing less seizures. However, we always seem to trade one symptom for another with many of the medications, whether it be irritability, insomnia, or something worse. I just wish SOMETHING would work positively for her like Lyrica did.

We did manage to find something that Mira enjoys to eat lately (besides her usual daily quota of sweet potatoes) which is pintos and cheese from Taco Bell. Go figure. She gobbles it right up. We figured we could make the equivelant at home with refried beans, cheese and some salsa so we aren't making daily trips to TB and the fact that who knows what is actually in it. I think she tends to get bored with the usual food fare we put in front of her, so perhaps Mira figures ANYTHING is better than sweet potatoes, applesauce, yogurt, or oatmeal.

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.

Wednesday, October 8, 2008


Sarah took the boys to Decatur over the weekend for a visit with Auntie Aura, while Mira and I enjoyed a nice long four day weekend here. As quiet as it was around the house, Mira seemed to be pretty irritable all weekend, so we managed to go on quite a few walks. I got our money's worth out of the double stroller and practically wore the tires flat in the process.

One of the things I did notice being home with Mira all day is just how many seizures she is having. I seriously lost count after 20 or 30. Most of them rarely last more than 5 seconds - where she lunges forward with arms extended for a few seconds, then comes out of it and pretty much goes back to what she was doing. It's the fact that she is having so many of them that is disconcerting.

There definitely seems to be a direct correlation between the seizure activity and her irritability. More seizures - more crying. There were a few moments over the weekend where she was just screaming and kicking like crazy and I could not calm her down, other than get her outside and go for a walk with her - just a change of scenery works wonders as a distraction for her. Her fussiness has continued into this week. The past several nights haven't been all that great too - getting up screaming and crying for 45 minutes to an hour each night.

We did take Mira off of Keppra last week, due to the fact that it wasn't doing anything and seemed to be agitating her. She had a very similar reaction with the Depakote - a poor one. So, we are essentially back in full swing on the medication merry-go-round. I spoke and emailed neurology most of last week, trying to determine what to do next. Mira's neuro agreed to try ethosuximide (brand name Zarontin - there is a generic equivalent which Mira is on) only because it has a very similar mechanism of action as Lyrica. Since Lyrica is basically the ONLY medication that has ever helped, we need to try and find similar medications with similar mechanics, but there just aren't many out there. She has been on the ethosuximide for only two days, so it's too early to tell anything.

Sarah took Eli and Mira to the dentist this morning and both did extremely well. No cavities, no problems, and no screaming!

Friday, October 3, 2008

On the Lighter Side

In the chronic state of worry and anxiety that surrounds Mira every day, it's time for a little comic relief. Eli (as well as Mira) take Coromega every day, which is a fish oil supplement (omega 3 fatty acids - good for the brain), masked with orange flavor and a hint of chocolate. In all honesty, it's the best tasting fish oil you can find and you pay the price for good taste. A month's supply costs upward of $50-60 for the both of them. Sarah and I tried to mask the fact that it's fish oil by calling it 'orange pudding', but nonetheless, Eli hates it. Every morning I get the exact same reaction from him, which is 'blah!'. Enjoy!