Monday, October 08, 2012

Rough Waters

For some inexplicable reason, Soren has had an increase in seizures September and October. It's incredibly frustrating because we are doing everything right and when he's not seizing, Soren is so happy and engaged. So when the seizures hit, it feels incredibly cruel. Often these seizures happen upon his waking up in the morning. We'll hear him cry out and he'll seize having a Tonic Clonic seizure for a good 4 minutes.

Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).

This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.

I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.

So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.

Amy

2 comments:

Telofy said...

I’m so sorry to hear that. I just looked up a few first-hand reports on what it feels like to have a seizure—I do hope the Lamictal or whatever other avenues you have in mind will help him!

Much love to Soren and the whole family!

bestwertyer said...

I used to have minor seizures but it went away after tasking toms of medicine but now I have tourette syndrome really bad now I hope you and soren will figure something. All my wubs and huggles go to you and your family!!!
-herowertyer™ on twitter