Saturday, June 23, 2012

Drugs and Other Drugs

Our visit to the neurologist was eventful and helpful. For one thing, she answered the questions about Ben's mobility problems and sleepiness. They are both side effects of the drug Clobazam. In addition, the medication, Doxepin, we are using to help Ben sleep through the night may react with the Clobazam and make him tired during the day.

Plan of action - give Ben the Clobazam only at night and give one Doxepin pill, rather than two. If seizures do not occur, we may lower the Clobazam dosage. We also have room to increase Ben's Lamictol, another seizure medication Ben currently takes.

We have Plan B, C and D too and they all involve changing doses if Ben has seizures or side effects. I have to keep the doctor informed about his progress.

I did bring along my long list of dates with all the changes I saw in Ben since April and she was pleased with all the recording I did. (A star for me.)

For the first time, I noticed that the doctor keeps a long list of seizure medications and for each one we have tried on Ben, she writes down his reactions/side effects next to its name. We still have several left, luckily.

I asked if managing Ben's seizures would get easier as he gets older with stable weight and brain growth. She said that she did not know because she strongly believes Ben has some sort of syndrome. I had forgotten that at the March appointment she told me about GeneDx Epilepsy Panel - a genetic test for over 100 gene abnormalities. She thought it could help determine more information about Ben's seizures and the best medicines to help his specific disorder. This test was made available recently for a reasonable price for families - typically under $100 after insurance payments.

I was supposed to think about it back in March and get back to her, but it slipped my mind. At this visit, I told her to start the paperwork, we would give it a try. I am doubtful that they will find Ben's syndrome, but if they do, it would be nice to finally have a solid answer to the frequently asked question, "Do you mind if I ask what your son has?"

As an aside, the doctor's first words to us were - "Wow, Ben looks so alert!" For the entire appointment, Ben made noises and smiled at the doctor, trying to prove me wrong about his listlessness. Oh well, call me a liar!

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