Wednesday, February 05, 2014

A brief update

It's been a nutty day already... too much snow, cancelled appointments, and such things. Thus I just don't have it in me to write a whole lot. Since we've been focusing on H. and preparing for her upcoming surgery, I thought I would give a brief update. It's been a frustrating couple of weeks and I have wondered how much I should share, but here's the general story.

I've told you that H. has seizures and that for the past two years we have been working with our neurologist to try to get them under control. The trouble with seizure medication is that it can only be started and stopped in incremental fashion and so trying something out or stopping one drug to try another is a long process. We thought we were on the right track. Currently she is taking Depicote and Kepra (the generic name of a drug that no one can pronounce). This combination seemed to be making the seizures milder and less often, but they were still happening. The doctor decided that it was safe to up the Kepra just a little bit to see if it would help stop the seizures. Sadly, it did not as she had another seizure five or so days after the increased dosage.

It did do something else, though, and it took me a little while to put all the pieces together. I have mentioned before how much more aware and participatory H. was becoming. It was like watching her true self finally start coming through the passive shell she had been. But in the past several weeks, I had found myself mentioning to J. at the end of the day that H. had a rather vague day. This was happening more and more frequently until last Monday when I sat down with her to do her schoolwork. I began with asking her what she had done the previous day because it has been an excellent tool to prepare her brain for the hard work of learning to read. Except that day she couldn't remember the previous day at all. This was particularly surprising since the day before had been filled with exciting and fun activities. It was fifteen or twenty minutes before she was able to conjure up what she ate the day before and then finally remembered what the previous day had held. This was longer than it has ever taken before and I was baffled and concerned.

Sometimes I am just slow. It took me a while that morning for everything to fall into place and realize that the increased dosage of the Kepra coincided with the beginnings of vagueness that had been increasing over the past couple of weeks. Seizure meds often work by damping brain activity because in this way it can stop the over-activity of the seizures. The trouble is, the medicine was compromising brain function while not stopping the seizures. It shows up the most in recall, though there are some other things as well. There just aren't a whole lot of new memories being formed, and it they are, then they certainly aren't accessible. It's just a wee bit frustrating for everyone.

So we're back to the drawing board. I'm trying to squeeze in a neurologist appointment in among all the surgery-related appointments. It will take a while to wean back on one medicine in order to try something else. If I were to begin this adventure all over again, I would start out keeping a log where I briefly write medication taken, general abilities, and anything else that might seem relevant. If I had done this, it might have save the several weeks it took for me to put everything all together.

4 comments:

Janet and Kevin said...

Will be praying for H. for a good result from her surgery. Thank you for the tip about keeping a journal. Our daughter Grace, whom we are leaving soon (Feb. 14) to bring home also has seizures. This is new territory for us, and your suggestion is a good one.

thecurryseven said...

Janet -

I'm so excited that you are so close to travelling! Praying everything goes smoothly.

e

Lucy said...

@Janet and Kevin - as you probably know the Guangdong province has been hard hit with the H7N9 bird flu this year. Please take every precaution when traveling there!

Anonymous said...

I'm glad for the insight you have had that the between the new meds and the difficulty with the new memories. Hopefully the doctors can make adjustments with this. I am praying for the surgery and the upcoming work with the doctors and the weeks in between and all the medicine.

thoughts and prayers,
Elizabeth L

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