Wednesday, January 20, 2010 4:11 PM
Rebecca is having a good 2010 so far. We are seeing lots of little things showing how much she is learning. So much improvement with how she plays with her toys. She is engaging with everything so much more. Seizure activity is up and down. But we are titrating down the Keppra. This is in hopes of adding Banzel later. Banzel is a drug specifically for kids with Lennox Gastaut. We wanted to get her off at least one of her other seizure medications that were not working very well before adding a new one. Keppra was never very effective, but it does seem like each time we have a drop in the dose, there is a dramatic increase in activity for a few days. But then it levels off, back to a baseline. The good news is that there has been 4 weeks between drops in doses. The VNS still continues to do fairly well. By and large she is having fewer seizures, and mainly the events she does have are only about 30 seconds. I’ve been really trying to track them, and keep a record of how long they are lasting. I was shocked when I started to time them lately and seeing how short they were. Of course she may not think so. We are still seeing a pesky Atonic seizure pop up now and then – these are the ones where she just falls down to the ground. She looses all motor control. BAM. A little puddle of Becca. yeah, we need to make her wear her helmet more because of these. But she is a con artist, she knows how to act like she wants to snuggle with us like she wants to sleep, so we will take it off, and then Poof she is ready to play again.
We also often put the helmet on when she has clusters of head drops. To the untrained eye, these seizures might look like someone who is nodding off to sleep/fighting sleep. You know – the classic head falling forward then jerking back up – then a short time later repeating the pattern. Except for her, this goes on and on for several minutes. She might have upwards of 50 plus drops in that time. Being a little kid, she is still top heavy, and un-coordinated so these sometimes make her fall down. Hence, the need for the helmet when she is having these as well.
Saturday, February 13, 2010 11:14 AM
Just wanted to let you know I added a few photos from us playing in the latest NC snowfall today. Rebecca had fun playing in the snow. We didn’t get to play in the last snowfall because she was sick with a really bad chest infection. Today though, we got more snow and she got to play in things. She really seemed to like things. for a child who used to HATE cold things, she wasn’t hesitant to touch the snow, taste the snow or be outside. Her boots made it a little hard to walk around, so she wasn’t very eager to move but she didn’t do too bad (then again snow boots make it hard for “normal” folks to walk!) Seizure activity is still so-so but we are still going along with the Keppra wean. So the fact things aren’t getting worse is good.
Soon we start with the big transition to Kindergarten for Rebecca.
Another EEG is planned for March 3, and follow up Doctor appointment with Dr. Mikati on March 4th.
I’ll update when I know more from that appt.
HAPPY VALENTINES DAY
Sunday, March 21, 2010 4:28 PM
Rebecca is doing fairly well these days. So I don’t have much details from our recent EEG. Mainly because we nearly forgot to ask the doctor about the EEG! He looked it up while we stood in the hallway as we were on our way out the door. Still shows seizure activity, but something about the wave form patterns or amplitude or something (?) was within normal limits for her age. Overall the EEG
looked better. I think all David and I really took home was “Better”. So far it really appears the VNS is a blessing! Sure we don’t have total seizure control – but its only a tiny fraction of patients that achieve that. We are happy we are in the percentage that have reduced seizures, reduced length of seizures she is having. Her quality of life is going up. This means also we are weaning her off some of the medications we know haven’t done much for her. This may allow us room later to put something different on. But even getting her off so many medications will improve her quality of life. Those medications are really hard on a developing mind.
She is a VERY active child now. Who would have thought she has only been walking a year. She is now learning how to go up and down stairs. She can do it, but still needs some assistance. She is learning to walk
She can do it, but still needs some assistance. She is learning to walk across the parking lot, holding hands like a big girl – this is more of a cognitive skill than anything else. Our next big thing will be her transition meeting in May. This will be when we iron out all the details of her moving from Pre-K to kindergarten! As for her annual IEP, which was earlier this month, we did decide to move her to “Support Services” for PT, which means she access the school environment on her own power now, and no long needs Physical Therapy at school. She still gets OT and speech, and we still do PT and OT on a private basis. But moving to support services is a big step. The PT will still be available to her, should she need it, should anything come up – but there just won’t be a set “15 minutes a week” or anything like that. But if say, the teachers notice Rebecca’s gait is all wonky – they can have the PT come in and take a look at things.
lifewithbecca 