Maria just came back from a trip to see her Aunt Rose. Cathy said she did pretty well overall. There were days she didn’t have any seizures but there were also days she’d have 30-40.
We just got back from her follow up appointment with her neurologist and we went over the hospital report with her. Maria had 13 seizures during the time she was on the EEG and I believe they were all on the second day. All of these were her “open mouth gagging” behavior however I don’t believe all open mouthed gagging is a seizure. They can start on either the right or left side of the brain and spread to both hemispheres but had “a clear left temporal predominance”. I need to look up temporal seizures to see what that means. They did point out that, though she appears to be choking, she wasn’t and her heart rate and blood oxygen were normal.
The report also mentioned numerous “inter-ictal discharges” which occurred as often as once per second. These are kind of like “pre-seizures” and can still have an effect on things like thought and memory. These occurred in the left frontocentral region (again I’m not sure of the significance of that).
They also recorded multiple “electrographic seizures” lasting 30-35 second but “without clinical correlation”. I wish I’d noticed that on the report so I could have asked her what that meant. To my non-medical mind that means “weird crap on the EEG but with no overt physical manifestation”.
Maria is currently getting a dose of Trileptal (10 mg/kg) which is 1/3 of the median dose (30 mg/kg). It has reduced her seizures but she still has many of them so the neurologist is having us increase to 15 mg/kg for a week then up to 20 mg/kg. We’ll call her in three weeks and let her know how much it’s helping. She said we are looking for increased awareness and function, which we’ve already noticed. The idea is to keep increasing it until we find the peak of effectiveness past which is the region of toxicity and bad side effects. However this is a very safe drug and probably the best anti-seizure drug out there.
During the visit with the neurologist Maria was very much in her own world and just wasn’t interacting much with us. This had the doctor concerned and started her on her usual “look it’s a seizure, look it’s another seizure, hey it’s another seizure” litany. Maria’s often like this at the neurologist and Cathy had always put it down to Maria having a bad day. However after the neurologist we went downstairs for her feeding therapy, and Maria perked right up. Maybe Maria’s just a good judge of character
This was our last visit with this feeding therapist since she can’t fit us in once school starts on Monday(!). However she got us in with another therapist we know and like and who also has experience with cochlear implants (since all feeding therapists are actually speech therapists).
I mentioned during one of the hospital blog entries that we both liked the on call GI. One thing we liked about him is his attitude toward patients. He’s from Ghana and there they don’t have all the expensive equipment so they have to diagnose patients by *gasp* talking to the patients! What a wild concept! Anyhow he agreed to see Maria as her regular GI if we wanted (and we do).
The point to that is that during the feeding therapy visit Cathy mentioned (and I’ve been feeling the same way) that she’s been taking a “wait and see” attitude to Maria’s GI issues because we didn’t like the previous doctor. However we’ve also both felt that she really should be followed by a GI for things like her chronic constipation. During the EGD the doctor was surprised to see there was still food in her stomach HOURS after she had last eaten. We are both more confident with this guy so we will try to get Maria in to see him at some point.
*phew* This entry is already long so I’ll just hit some quick highlights. We are demoing a Swifty stroller and like it so the real one is being manufactured and shipped as we speak. Tonight we go for the open house at the school – did I mention that starts Monday? Maria has so many more issues than we talked about at the last school meeting. There’s probably more but that’s enough to fill your brain for now.