Our neurologist got back to me on a Friday evening, just an hour after I e-mailed him. Wow.
He said the high felbatol level was not worrisome, as it was taken just a couple of hours after John was given a dose. The reference range refers to the level first thing in the morning. Still, he said to go ahead with our reduction of the Felbatol. So, we took out 1 ml in the morning, starting yesterday. We're crossing our fingers that he remains seizure free. I think he will.
As for the EEG, he said it was a big improvement over the last one. In his words: "I'm pleased to see that it's tremendously improved from John's prior studies, including the video-eeg from 2004. His waking background looks dramatically better than before."
Wow, that is great news! It's the first time in 3 years that we've heard that things are better than before. Let's hope he's turned the corner and will continue to improve.
As for the focal point, he said that the focal point is for discharges and may or may not also be a focal point for actual seizures. If the seizures return, we'll get an extended video EEG to see if the seizures also originate from this focal point. Still, it's definately different than his previous EEG's, where the seizures and discharges came from everywhere. He also said that he took a look at John's most recent MRI and there was nothing abnormal in that area of the brain.
Monday, November 05, 2007
Friday, November 02, 2007
EEG results
His EEG showed some interesting things. It's still very abnormal, which is no surprise. But, it looks like he has more discharges while sleeping, which was a bit of a surprise to us. We've never seen a seizure at night.
The big news is that it looks like there might actually be a focal point!! He's had quite a few EEG's, and this is the first that showed any indication of any focal point. Of course a focal point is really big news, because if you can clearly identify the exact focal point, it's possible to actually go in and remove that part of the brain. But, that's a long way off and we don't want to get ahead of ourselves. We're hoping that they might be willing to do further testing, though.
Here's the full text of the EEG report:
Introduction: This is a routine electroencephalogram performed on a 5-year-old with history of seizures since age 2, which have significantly improved with vagus nerve stimulation [note: not true, it was the Keppra!]. Last seizure was reported May 2007. Medications include Keppra and Felbatol. The standard 10-20 system of electrode placement was used with one channel of EKG monitoring.
Description of the record: During periods of relaxed wakefulness, there is a posterior dominant rhythm which consists predominantly of 7Hz activity of moderate amplitude, with lower amplitude faster frequencies present symmetrically in the anterior head regions. Reactivity to eye opening/closure is not demonstrated.
Although waking background is somewhat obscured by muscle artifact particularly in the frontal regions, only rare to occasional sharp and slow wave discharges are seen with phase reversal at FP1. These appear to increase in frequency as likely drowsiness is entered, suggested by decrease in movement and muscle artifact.
During sleep, these discharges occur frequently. Although at times they are near-continuous, occurring at 1 to 2 hertz, there are usually several seconds in which no discharges are noted. At times there is a broad field to these discharges, spreading to the left temporal and central regions.
Vortex sharp waves and spindle activity of sleep are seen.
EKG shows normal sinus rhythm throughout the recording.
Impression: This is an abnormal EEG for age recording wakefulness through stage II sleep due to mild diffuse background slowing, and left frontopolar epileptiform discharges which increase with sleep.
Clinical Correlation: The diffuse background slowing suggests diffuse cerebral dysfunction, though not specific as to etiology. The left frontopolar epileptiform discharges suggest a focal and possibly rapid secondarily-generalized mechanism of onset to the patients seizures.
The big news is that it looks like there might actually be a focal point!! He's had quite a few EEG's, and this is the first that showed any indication of any focal point. Of course a focal point is really big news, because if you can clearly identify the exact focal point, it's possible to actually go in and remove that part of the brain. But, that's a long way off and we don't want to get ahead of ourselves. We're hoping that they might be willing to do further testing, though.
Here's the full text of the EEG report:
Introduction: This is a routine electroencephalogram performed on a 5-year-old with history of seizures since age 2, which have significantly improved with vagus nerve stimulation [note: not true, it was the Keppra!]. Last seizure was reported May 2007. Medications include Keppra and Felbatol. The standard 10-20 system of electrode placement was used with one channel of EKG monitoring.
Description of the record: During periods of relaxed wakefulness, there is a posterior dominant rhythm which consists predominantly of 7Hz activity of moderate amplitude, with lower amplitude faster frequencies present symmetrically in the anterior head regions. Reactivity to eye opening/closure is not demonstrated.
Although waking background is somewhat obscured by muscle artifact particularly in the frontal regions, only rare to occasional sharp and slow wave discharges are seen with phase reversal at FP1. These appear to increase in frequency as likely drowsiness is entered, suggested by decrease in movement and muscle artifact.
During sleep, these discharges occur frequently. Although at times they are near-continuous, occurring at 1 to 2 hertz, there are usually several seconds in which no discharges are noted. At times there is a broad field to these discharges, spreading to the left temporal and central regions.
Vortex sharp waves and spindle activity of sleep are seen.
EKG shows normal sinus rhythm throughout the recording.
Impression: This is an abnormal EEG for age recording wakefulness through stage II sleep due to mild diffuse background slowing, and left frontopolar epileptiform discharges which increase with sleep.
Clinical Correlation: The diffuse background slowing suggests diffuse cerebral dysfunction, though not specific as to etiology. The left frontopolar epileptiform discharges suggest a focal and possibly rapid secondarily-generalized mechanism of onset to the patients seizures.
Blood results
I just got John's blood test results:
White cell count, hemoglobin, hematocrit, MCV, RDW, Platelet Count, Iron levels, and Lead levels were all fine.
His red cell count was slightly low at 3.87, with a normal range of 3.90 to 5.30.
MCHC was slightly high at 35.6, with a normal range of 33.4 to 35.5.
His Keppra level was 9, where the range is 5-30, so he's still on a really low does of that.
Felbatol was 79 ug/mL, with a reference range of 30-60. So, he's on a LOT of Felbatol. We have already talked about lowering this a little, and I suspect we'll be advised to start that reduction shortly.
So, outside of the high Felbatol (which was absolutely no surprise to us), everything looks pretty good. We're happy to see the lead and iron levels checking out fine.
White cell count, hemoglobin, hematocrit, MCV, RDW, Platelet Count, Iron levels, and Lead levels were all fine.
His red cell count was slightly low at 3.87, with a normal range of 3.90 to 5.30.
MCHC was slightly high at 35.6, with a normal range of 33.4 to 35.5.
His Keppra level was 9, where the range is 5-30, so he's still on a really low does of that.
Felbatol was 79 ug/mL, with a reference range of 30-60. So, he's on a LOT of Felbatol. We have already talked about lowering this a little, and I suspect we'll be advised to start that reduction shortly.
So, outside of the high Felbatol (which was absolutely no surprise to us), everything looks pretty good. We're happy to see the lead and iron levels checking out fine.
Thursday, November 01, 2007
EEG
John had another EEG this morning. As always, it was pretty traumatic for him to have to lay there while the leads were glued on. It gets harder each time, as he gets stronger and louder. We had to wrap him up tight and have 3 of us hold him down just to get the leads on. It was pretty torturous for about 20 minutes. He finally wore himself out and fell asleep.
The EEG itself clearly showed seizure activity. The technicians can't tell us anything, of course, but anyone can tell that when the lines go from almost flat to a wild storm that something is not right. We'll get results next week, but if I had to guess I'd say it was still very bad, but probably a little better than last year. At least this year we could see a few stretches that lasted 20 seconds or more without a discharge.
I have no idea what the doctor will recommend after this. I don't know if he will want to go up on drugs, quickly replace the VNS, or to just leave things alone as John is doing really well these days.
Hopefully he won't need to do another EEG anytime soon. That is honestly the most upset I've ever seen him. He was so worn out that he had to miss school completely. But, true to form, he's back to being completely fine this evening. His parents are still pretty worn out, though.
The EEG itself clearly showed seizure activity. The technicians can't tell us anything, of course, but anyone can tell that when the lines go from almost flat to a wild storm that something is not right. We'll get results next week, but if I had to guess I'd say it was still very bad, but probably a little better than last year. At least this year we could see a few stretches that lasted 20 seconds or more without a discharge.
I have no idea what the doctor will recommend after this. I don't know if he will want to go up on drugs, quickly replace the VNS, or to just leave things alone as John is doing really well these days.
Hopefully he won't need to do another EEG anytime soon. That is honestly the most upset I've ever seen him. He was so worn out that he had to miss school completely. But, true to form, he's back to being completely fine this evening. His parents are still pretty worn out, though.
Halloween
We went to Eric and Amy's for Halloween again this year. Maya had a good time trick-or-treating (after recovering from her fall). But John just isn't the least bit interested. He got frustrated right away and only wanted to put leaves in to the storm drain. So, he came back home early and had fun playing on the stair railing.
We were thinking that maybe spider-man would have been more appropriate than batman.