For those of you who do not know, our Gina, has experinced some seizures of late. Ambulance, 911, IVs-- scary stuff, an EEG (with only 4 hours of sleep allowed the night before, what FUN that was) but here is the latest update:
Let me start by saying it finally happened. I had the BIG cry last night I am a big advocate of this, but it was just not coming until last night. It was 2 weeks of worry, fright, sleeplessness, etc. Theo hit my nose with his head real hard and then he “faked” being sleepy so for a few minutes I thought he had a concussion. I freaked. He laughed and came too and I lost it. I cried for a good 20 minutes, but now the Old Michele is back. I have come out of my eating coma and am really myself for the first time in weeks and weeks.
We are back from the Neurologist who is just amazingly knowledgeable yet able to describe everything to me in a way that I clearly understand what is happening. A skill not all doctors have. Cute wise he is no Dr. Derrick Shepard (see Grey's Anatomy), but you cannot really have it all, I guess
Gina definitely had an abnormal EEG and has Epilepsy (defined as someone that has had more than 1 seizure). The abnormal electrical activity can be found in four isolated areas of her brain and the left and right sides of her brain fire off these unusual electronic impulses at different times. These are called partial seizures. Also, the interesting part is that the two lobes of her brain (the kind of wormy looking parts) are not copies of one another like they should be. This could be reason #2 for her seizures (general seizures). This can be found many times in children with genetic disorders. She will be going on a medicine called Keplar, which is the seizure medicine with the least side affects (irritability/drowsiness at first), She is starting with a very small dose once a day (right before bed) and moving up to 2 larger doses twice a day. This will happen over the next month. She will be on a 2 year regime and then the EEg will be repeated. Tests have shown that many kids after 2 years on this medicine do not need it any more (electric stuff figures itself out) and no more seizures. Studies have also shown that it may very well help with her receptive learning. Outside chance it could help with learning but not stop the seizures. Dave and I feel it is well worth a try.
She also needs the MRI repeated (sedation will have to happen) as he wants to greater explore the unsymmetrical lobes of the brain as the picture he was looking at was from her MRI at 18 months. Her brain has done quite a bit of growing since then…
He could show us on the MRI where the separate electrical impulses are shooting off based on the EEG tape. It was totally fascinating.
Overall, he said neurologically she is right on and we should not have a long time worry in this area. She was really, really cooperative.
We then went and had a relaxing Starbucks visit (the new Cinnamon Dolce FF/SF Latte is VERY Good).
I am back on WW track. Feels good to have something in control!
Thanks for listening!