No News is Pretty Good News

Well it has been months since my last blog. I guess that writing in a blog is as difficult as writing in a journal- easy to procrastinate and put at the bottom of my to-do list.

As more time passes with this illness, the more we've adapted and probably at some points become numb to what happens. Grace for sure is more stable. Her med doses still aren't perfect, but her behavior and safety regarding the seizures has been more stable.

The hardest part is instilling new behavior changes which requires our family to change as well. And as most people know, change is difficult. Let me recap the last couple of months.

October: The month of October was busy but pretty stable. It is a very busy time at the Lodge, and the kids were resilient and survived they're parents being unavailable a lot of the time. Grace did quite well during October. Her seizures were infrequent but still present. They still happened usually when school was out for the weekend. Other times, the seizures would increase when she had a really busy week at school with lots of demands at school and at home. I spent time talking with the PA who encouraged us to make more of an effort to stabilize our routine and decrease the stress at home and at school. Easier said than done, but we're trying.

Grace's Keppra dose was increased, so now she takes 750mg morning and night. The month's highlights were Grace's birthday on the 12th- she turned 9 and got to have 2 birthday celebrations. The other was Halloween where Grace was a purple Barbie Fairytopia and wore a purple satin dress that Grandma Van Dyke made for her.

November: Grace was officially enrolled in Special Education at the end of October. We made some plans with the school that will help her in some of her weak areas like test taking, reading comprehension & inference, and social skills. I took Grace & Tommy to Las Vegas to hang out with my sister April over the 2nd weekend (11/9-12). I think Grace needed the break away from the ranch and school.

One thing we assumed but learned for certainty is Grace is helped the most by her Keppra. She dropped a pill on the ground (Nov. 13) and didn't realize it. Dave found the pill the next day. Keppra takes 3 days to make a difference, and by Wednesday (day 3), Grace had a seizure at school. It was her first seizure at school which really caught the teachers off-guard but they handled it pretty well.

On Thanksgiving (11/23), Grace woke up with the stomach flu. She didn't get to have any Lodge dinner and was so sad. She ended up throwing up twice, the first right after she took her pills. This effected her the next week with a few seizures on 12/1, another Friday.

December: In September & October I spoke with the doctor about trying to reduce the dose of Trileptal which is the medication I don't think is as effective with Grace. She didn't really stop having seizures consistently until she was on the Keppra. The difficult thing is timing in trying to reduce her dose during a time that is not stressful since stress also seems to bring on seizures. So I decided to lower her dose of Trileptal, which I did on 11/28. She is now taking 150mg less every day, and appears to be doing really quite well. I am not ready yet to try to drop her dose again.

One thing we've also learned is that Grace does better when her meds are truly 12 hours apart. When she goes to the movie, she does better when she takes her meds prior to the movie (7:30) than when she goes to bed (10:15). The movie in this county only shows at one time, so if we go to the movies, it is definitely a late night for her.

Also this month, on 12/8, her meds were missed and not given until late in the afternoon. We eventually got her back on a schedule, but then she had some seizures 10 days later, morning and night. She also had seizures once we got to California after driving all night and again after driving home to Utah.

So, this is what I'm certain about: 1) Grace needs her meds 12 hours apart, and although she is compliant in swallowing her pills, you have to watch her take them because sometimes she drops the pills without noticing they don't get to her mouth. 2) Grace is also affected by not getting enough sleep, and if she starts having seizures, they can be stopped by increasing her frequency of taking naps and getting to bed before 8 PM. 3) She also seems to have seizures when she gets upset and yells, or when I get upset at her and yell. Sometimes I have her come home early with Tommy on the bus so she can nap better at home. 4) We also started doing backrubs at bedtime. Grace really likes this (as do the other kids). She does have a lot of knots in her back and neck, and when I rub them, she sleeps much better. I'm sure having seizures in addition to being a pretty rough & tough kid gives her lots of kinks.

Thursday, January 4, 2007: Grace didn't have any seizures last night after having seizures in the night since Sunday night. She is getting more sleep and settling back into her school routine. We try to listen for seizures by using the baby monitor, but Caroline is good at keep track. What I found out is that Caroline has been getting up in the night with Grace during her seizures, which is wiping Caroline out. So I've encourage Caroline to stay in bed and even though she might note the time, she doesn't have to sit with Grace during the seizure. They happen so quickly and only last 15-30 seconds usually and Grace is "out of it" while it's all happening.

I do need to weigh Grace and possibly call the doctor about whether her Keppra dose is high enough and report to him regarding how she is doing on the slightly lower dose of Trileptal. But I will wait until our routine is back to normal from the holidays.

I am also going to try and make a better effort to eliminate sugars from her diet and see if that makes a difference. Grace is definitely a boredom eater and will turn to sugary food when she is bored.

Regarding her behavior, Grace still acts out at times. This morning we discovered that she poked pinholes in pictures on Carolione's bulletin board. They share a room because Grace refuses to sleep alone. It might be time to separate their belongings, and although they might sleep in the same room, Caroline could have her belongings locked in a different room. Grace definitely doesn't respect boundaries. What's hers is hers, and what's everyone elses is hers as well.