A pleasant and unpleasant day

>> Tuesday, December 11, 2012

An eventful day.

And I mean that in a couple of ways.

We made it to our appointment with the NP at PCMC Riverton, a few minutes late, because the Bugster had a seizure as we were getting in the car. We waited for him to recover, dropped off Tay and got on the freeway.

The wait for the NP wasn't long. When he entered, he noted that we had seen a different Neuro yesterday and asked why we were even there with him. Valid question.

We explained: We had thought we might wait to treat the FRa and we will, change one variable at a time you see, but that doesn't mean we shouldn't TALK to an Immunologist about the FRa and FORMULATE a treatment plan once he is weaned. Especially since NO Immunologist has treated this before. He/She will need time to learn about it and HOPEFULLY, they will learn about it. The NP agreed and he wrote a referral.

Glenn updated him on the plan to wean the Phenytoin and he asked: Where were you doing the EEG?

Provo, I said.

Oh, well, let me see if you can do it here, today. Would that be OK?

Would it? You betcha.

30 minutes later they were hooking him up. How cool is that?

The EEG looked pretty good, in fact, it looked really good, better than it has in years. Oh goodie! So that makes the rest of the day surprising.

Glenn had an emergency crown repair on his tooth which was worse than anyone thought. While he was in with the Dentist, I took the Bugster to school. As we pulled up to the doors, he seized. It was a full 60 second Tonic and took him almost 20 minutes to recover. So, I turned right around and took him back to wait for Daddy. An hour and 20 minutes later, he seized AGAIN. And he hasn't been right since. He has had quite a few quick myoclonic seizures, I have seen 3 in the hour I have been home. Nothing major but WTH?

So tomorrow, I start the wean. Nervous is an understatement. Couple that with excitement at possibly making progress and I might throw up before the week is out.

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