Epilepsy Update

Most of you already know that Caleb was diagnosed with epilepsy (a person who has had two or more seizures with unknown cause) a year ago.

All but one of his seizures has been full-on convulsions in his sleep.  The one exception was an absence seizure, which he had a year and a half ago, in the swimming pool.


He was standing there, and then his eyes crossed as he stared off into space, and he couldn’t hear or respond to a single thing we were saying.  It was so weird.
Last Friday I was walking the boys home from school when Joshua said something about Caleb shaking so hard in his sleep “last night” that he fell out of his bed.  After much questioning, it sounds like that is exactly what happened, and Joshua has now been reminded of the importance of coming and telling us when he sees anything like this!

By that point, Caleb was already coming down with the cold, so I explained to the neurologist (at Caleb’s appointment yesterday) that I thought it could have been related.  He said that of course it could, and there is no way to know.


He said this starts Caleb over on his two-year count to being epilepsy-free.  Such a shame after not seeing a seizure for a whole year, but this sounds like it was a bad one.
I really feel the need to keep Caleb WELL now.  That boy is going to the doc at the first sign of fever next time, and not an hour will go by without tylenol or advil in his system because fevers are a seizure trigger.  Sleeplessness is also a trigger, and with all the coughing, Caleb wasn’t sleeping as well.
Parenting is a tough job.  I love that little boy so much, and I hate seeing hard things happen to him.
The neurologist said that swim team is still fine for him, as long as we always have someone there watching him, even if it’s just from the side of the pool.  We’re also ever so slightly increasing Caleb’s medicine dosage.
That appointment was yesterday.  I had both Dan and Caleb with me, and with all the waiting and herding little Dan around, I left the hospital newly resolved to have my tubal ligation with this pregnancy!!  It is no fun managing Daniel in waiting rooms when you’re 7 months pregnant and also coming down with a cold!



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