Seizures update

At the end of last week, I asked Nate's teacher to please keep a log of his "episodes" and to look for any signs like lip smacking, eye twitching, finger rolling, etc. Yesterday when I picked him up, one of the teacher aides said he had had a "seizure" (he had zoned out). Apparently her daughter experienced absence seizures and she recognized it as that. Except the EEG showed these are not absence seizures. Then when I picked him up from school today, she said he had another one. Both times, there was no other signs except for the stopping and staring, zoned out.

The pediatrician's office was still trying to get an appointment with Dr. Puri because that's what I insisted. But April was going to be the soonest we could get in, and his April schedule wasn't even open yet. So I called the neurology office, and a nurse practitioner called me back. She had Nate's EEG report and explained that he did not have a seizure during the test, but there was epileptic activity, which probably means he is having seizures, just not during that test. The next step is to have an extended EEG, where he will be admitted to the hospital for 23 hours (strange) to monitor his brain waves, and anytime we see one of his zone outs, we'll push a button so that they can see what his brain is doing during these things we're seeing.

She asked me a bunch of questions about Nate and these episodes, and she said she would not advise waiting until April for him to be seen. So she (the nurse practitioner) will see him on Feb. 16 (we'll have MRI results by then), and Dr. Farber (the other neurologist, the one that read his EEG) will come in at the end. Then we'll probably schedule the extended EEG. If we want to switch to Dr. Puri later, we can. In the meantime, the nurse practitioner wants to us to try rubbing his sternum when he has an episode to see if that brings him out of it more quickly.

Earlier in the day I also put in a call to Vanderbilt, but it looks like it would take just as long to see a neurologist there. Besides, if there was some type of emergency, we would take him to Kosair here in Louisville, so we want a neurologist here in town. But Nate's neurosurgeon's nurse is going to call me so I can check in about the hydrocephalus stuff and just keep them in the loop and see if there's anything more we need to do.

I'm just on edge about all of this. He's been doing so well, and we've had no concerns, and then BAM we find out something has been wrong and we didn't even recognize it. I've always thought of Nate as a little puzzle, and I have no idea what's going on in that little body. I know there could always be something wrong and I have to be vigilant about looking for signs of a problem. At the same time, I can't constantly worry and have to trust that God is in control and has always known Nate inside and out. "Before I formed you in the womb I knew you." (Jeremiah 1:5)