Mystery and Victory

I took Ben to the ER on Tuesday night because he started having seizures.  They gave him an infusion of IV anti-seizure medication, and he has been fine ever since.

I feel like I should give some brief background here.  When Ben started having uncontrolled seizures several years ago, his seizures came in clusters.  The clusters lasted about 4 – 6 days.  Again, he was having complex-partial seizures and not full convulsions, so it took a long time for me to realize exactly what was going on.  And Ben’s seizures have never really fit the “textbook” definition of seizures.  They’ve always been a bit unusual, a bit different from what the doctors would say is typical.

Several years ago Ben started to go through days where he would be completely and totally under the influence of these seizures.  The seizures would go on for a few days, and then he would return to normal.  As the seizures got worse (despite trying many different medications and combinations of medications), the clusters would last longer.

Early last year, it was clear that the seizures were “winning.”  Ben appeared under the influence of abnormal brain activity far more than he wasn’t.  By April it was obvious to me that if he started having seizures, the seizures would not stop on their own at all.  It was clear that he was undergoing regular non-convulsive status epilepticus.  He needed significant medical intervention in order to stop the seizures.

For some unknown (and wonderful) reason, Ben has been seizure free for almost 6 weeks.  But on Tuesday night when I came home, I could see immediately that the seizures had returned.  I watched Ben have at least 5 seizures in just a few hours.  In each case, he insisted vehemently that he was not having seizures, he was just “going through a rough patch.”

Even though Ben was unwilling to admit the severity of his condition, I decided that the best thing for us would be to go immediately to the ER and have Ben treated with some intravenous anti-seizure medication.  Large infusions of this medication have been the only thing that have stopped Ben’s seizures in the past.

At first Ben resisted.  Then he seemed to agree to come to the hospital with me.  But it still took me over an hour to get him into the car.  We went to the local hospital, where we spent 5 hours waiting for lab results and giving Ben an infusion of intravenous dilantin.  By the middle of the process, I could tell that the seizures had broken and Ben was back to normal.

Ben woke the next morning with no memory whatsoever of most of the events that had transpired the night before.  He felt disheartened and thoroughly defeated when he realized that the seizures had come back and that he hadn’t been able to stop them.  I, on the other hand, felt empowered.  This is the first time that I have brought Ben into the ER on the first day of his seizures.  It never occurred to me that I could shorten his seizure clusters by treating them in the ER immediately.  I feel as though we gained days, if not weeks of our life back.

We met with Ben’s neurologist at Hopkins this morning (believe it or not, we had a previously scheduled appointment), and discussed the situation with him.  At this point, we are going to continue with Ben’s current treatment but we will monitor his medication levels much more closely.  The thing with seizure meds is that they all work differently.  With some of them, you really can’t do much to see if they are working other than trial and error.  With other meds, you can check bloodwork and see if the level of the drugs is sufficient to be effective.  One of the four anti-seizure drugs Ben is regularly on can be monitored by blood-level.  This is the same medication they give Ben intravenously when his seizures cannot be stopped in any other way.

So finally I feel as though I have an “out.”  A way to prevent days, if not weeks, of Ben having seizures.  I expect we may be making more trips to the ER.  But instead of being a last option, this is a great victory in the way of treating Ben’s seizures.

ICorinthians 15:57 – 58

But thanks be to God, who gives us the victory through our Lord Jesus Christ.  Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.


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