This Summer

I wanted to speak in glowing terms about how much I love our summer. The weather has been awesome and hot. The girls have gone to two great VBS camps, one at Duvall where I helped a bit, and one at Annika's former preschool. We have had the precious gift of time to slow down and just enjoy each other and the moment. We've had a chance to prayerfully contemplate what we can accomplish this coming year. We've spent time with friends, and it's been amazing. Other than those couple organized events and teeing up the girls' various lessons (sewing, music, French), the girls and I have just been hanging out, working on some new recipes, going to the lake to laze about for hours swimming and relaxing. I've been losing weight. The sun, the heat, my new attitude since "discovering myself in France", it has all just seemed SO rejeuvenating.

The one thing which has been our little source of challenge is Annika's Epilepsy diagnosis. We've been watching her closely since her first seizure (well, her first full throttle one) 6 weeks ago. So, even though we've been seeing docs, researching treatments, doing tests etc, I have to admit that I've been a bit in denial that another seizure would even happen. Her MRI was normal. Her EEG is not, and it shows the specific part (left temporal spikes) indicating her type of centro-temporal epilepsy of childhood. I was hoping she would just not have another seizure and I wouldn't have to delve too deeply into the whole question of regular meds, but on Saturday her tongue went numb for 5 minutes (but she was fine after that) but on Wednesday, she had a full blown seizure. This one lasted 45 minutes and I videotaped portions of it to document it for the doctors.

There's nothing you can do during the seizure but be calm and hold and reassure your child. I wanted to freak out and scream because my baby seemed to be suffering so much, but I stayed soothing at the time. I remembered that the docs in France had given me an intrarectal sedative to give her if the seizure lasted longer than 30 minutes. Well this one did and right at the 40 minute mark or so, it started to get worse, more shaking and then gurgling in the throat, unresponsive to me, so I tried to call around to our Pediatrician for advice on how to give it. I had mentioned this to the docs here, but they were not really commital about whether they recommended I give it. So, the first office staff at my pediatrian's office said, "Why not leave a message with our nurse advice line and they'll get back to you within three hours?" Three hours? My daughter is seizing in my arms. Okay, so Lauren went and grabbed the Neurologist's number. Again, office staff says take her to ER. Again, this is a physical impossibility as she's seizing in my arms. What am I going to do, throw her in the back seat? People! Okay, I can't get upset...I must remain calm and soothing.

I didn't know exactly how and if to use the sedative because of the denial I guess. I had hoped against hope and as usual denial didn't work. So, anyway, then I had to call 911. I just wanted advice, but what I got were about 10 firemen and medics and an ambulance ride to Children's. The seizure finally subsided and ended a few minutes after they arrived, but, still, what a relief to see them.

Later that day, Karen came by and watched Annika and the girls while I went to fill Annika's prescription. I nearly lost it at the pharmacist's counter when she put the anti-seizure medicine in my I hand, but I made it to the car to have my little break down. It was a relief after an Academy Award worthy day of acting calm and reassuring.

So, it's on. I a mom. I am scared, and I have a lot to learn about epilepsy. My daughter has been prescribed, and, gulp, is taking a drug that affects her brain chemistry. I am going to research everything I can about ketogenic diet, and though the original, pure diet seems so impractical, there are apparently "trials" going on about a new "Atikins-type" diet and they're trying to measure its effectiveness. That sounds promising!

I will talk to our fabulous Pediatrician on Monday, and I'm on the waiting list for a new Neurologist.

She took her first dose of Keppra Wednesday night after her seizure. It was prescribed by her Neurologist on the phone from the hospital. So far, her reaction to his phone-in dose has not been great, so I'm going to have to talk to him asap. I know it's his job to stop her seizures, but it's my job to raise her and make sure her life is good. So I need to decide which is worse: the seizures or the meds' side effects. So, I'm going to record our experiences here.

Keppra Day One:

She was so sleepy on Wednesday afternoon (being post-ichtal, aka post-seizure) because apparently a seizure is really a ton of physical work. She was sweating a lot during it. The paramedic told Lauren it would be like running to Albertsons and back. One hour after I gave her 100ml, around 5pm at night, she started really amping up. She was wound like a top. She was jumping on the chair, and then went flying right off of it onto the floor on her face. That was very odd. An hour later, she was talking to Kevin on the phone, and she could not keep still, smacking her feet together (looks like it would have hurt and it looked so odd for her because she's usually so gentle and sensitive), and she was also slamming her feet down on the bed...laying on her back and doing a dolphin type movement that ended with her feet slamming down on the bed, over and over. It reminded me alot of the way Beau is at night, like just trying furiously to get energy out. But when she finally closed her eyes to sleep, she was asleep in 2 seconds it seemed. Also, odd for her.

Keppra Day Two:
.8 in the morning. Really hyper and talking back to me. I found it so odd that she would do that because she doesn't usually. When I told her it's unacceptable, she was sorry and seemed herself again, so it was just momentary. Little later, still hyper, running everywhere instead of walking. Slightly odd. Then, she fell on her knees getting off the toilet. Very Odd...this has never happened before. Then later she tripped over a clothing rack in Fred Meyer and scraped her foot on the rack. Quite odd. Somewhat hyper the rest of the day...general sense of being wound up, but I can't say it's way beyond the norm...sort of like Christmas eve hyper though or something. Or hungry or tired hyper, but it lasted pretty much all day and had nothing to do with hunger or sleep. .8 before bed, starting to get really hyper, but when she's told she really needs to go to sleep, she just closes her eyes and bam, sound asleep.

Keppra Day Three
.5 in the morning. Pretty normal all day. .5 at night. Hyped up but slept well. One fall over the door step.

Keppra Day Four
.5 in the morning. Pretty normal today. She started to hype up just before bed, running across the couch and seeming kind of insecure and needing attention (so atypical for her). Gave her .5 just 5 minutes before bed and she went straight to sleep. No unusual falls (even though she jumped down about 6 stairs to the landing, and was constantly dancing around on her tip toes like Angelina Ballerina). I don't know how she's going to start K if she doesn't settle down. Or maybe we can find another solution to the seizures.

Day Five
I didn't give her the med all day. She has a good day, no falls, and she seemed to be herself. I gave her 1 ml. right before bed and she seemed really hyped up for about 30 minutes, insecure, kept wanting more hugs, and FINALLY fell asleep.

Day Six
Dr. Chattra, aka, "Our Hero", said that I did the right thing to reduce the dose. It's just not worth it to have Annika falling and behaving strangely. I'm going to see the Neurologist on Wednesday.

Day Seven
Low dose am and pm, and no problems.

Day Eight
Even the Neurologist says to give the low dose. And, he even said that, upon ramping up the dosage slowly over several weeks, if she doesn't tolerate it well, without any side effects whatsoever, we will simply "fire the medicine" because there are other options. This is fabulous news.

It is such a relief to have this under control. I know everything is going to work out.

I guess I won't even need this Keppra diary unless there are anymore strange behaviors to report. This is just so fabulous.