As you may remember Spencer was diagnosed with CM, though thankfully no SM, in mid-February. He’s been on Neurontin (gabapentin) for 32 days and is taking 200mg twice a day. He doesn’t scratch quite as often but definitely with the same intensity and for about the same duration (40-100 seconds- I've timed it!). I finally got to speak with our neurologist today. Gosh, was he hard to get in touch with! He was disappointed to hear that he’s still scratching though did say it was good that the episodes have decreased a little.
He wants us to try 300mg of Neurontin twice a day for two weeks and I need to watch him like a hawk for any signs that his scratching is decreasing. I mentioned adding Tagamet to the Neurontin. He said that we could try it though he’s not sure if will help since Spencer doesn’t have a lot of CSF production and Tagamet is usually good at reducing this. But I’m going to try it anyway! If after two weeks I don’t see improvements he wants us to consider surgery. He said the damage is ongoing and irreversible but surgery would help avoid continuing damage. He does decompression surgery and lamanectamy. I really hope we don’t have to go down this road now but if we do I’m going to research whether it would be better to have Dr. Dewey do it since he’s using the mesh plate.
Please send good thoughts our way. And to Molly and Bentley and all the other wonderful CM/SM furchildren on the board.
Spencer and his mom, Whitney