Wednesday, November 4, 2015

Purple November

So November is Epilepsy Awareness month. And purple is the color assigned to epilepsy awareness. I remember getting the boys all purpled up for epilepsy awareness month in 2013. But we were still seizure free then. Had been for years. And I remember thinking how those seizure-fighting-warrior parents were my people, but also that I was feeling somewhat disconnected because, well, we weren't fighting that giant anymore. No seizures. No meds. No fear or worry that they'd ever come back.

But they did.

In that very same year.

Luke had a seizure three days before Christmas in 2013.  In the middle of the night. Such a horrible time to have a seizure. And since it had been so long since any kind of epileptic event, it was considered his first seizure really. His first of that kind. Really epilepsy?? You come sneaking in in the the middle of the night. Unannounced and uninvited. No wonder so many people hate you.

Luke had a second seizure 4 months later.  Then we started meds and enjoyed almost a full 12 months with no seizures.
Then 2015 came and the seizures have come more frequently. Five this year. And as much as I try to talk myself down and calmy tell myself that MANY people are living with epilepsy and that no matter how bad it gets, I have friends who have walked (are walking) this road and they're making it.... the fact is, seizures are just an altogether different kind of monster. Luke's seizures are mild(ish?) in nature. But they're too long and, so far, have always required us to administer an emergency med to stop them. And a couple have been sneaky...happening in the early morning hours or later in the evening. Two of them we have missed completely and walked in to find him in the the post-seizure state. We're not real sure how long those lasted.

So, yes, the truth is this IS the normal for soooo many families. So many. We are not alone. But I can't deny the stress that it does in fact add to life when seizures are not controlled. And, at this point, I'm not sure we can say they are controlled. Of those 5 seizures, 4 of them have happened  in the last six months and 2 of those in the the last month. There's definitely something going to figure out what that something is.

After his last seizure on Oct. 22nd, I called up to neurology to request that we PLEASE have an EEG scheduled that we please move up our next scheduled appointment, which isn't until Dec. 10th. That seemed reasonable to the nurse on the other end of the line, so she got the ball rolling.
Luke had an EEG a week ago today.  We found out the EEG is unchanged from the one he had in 2013. So, that is some relief. But still we are left with the reality that despite increasing the medication dosage in June, the seizures have only become more frequent.
Considering that, I really wasn't expecting the nurse to call me back and say, "The doctor just wants to keep your Dec. 10th appointment. For now, let's increase the med dosage again and see if that helps. "

Me: "Ok. Uhm....yeah, I mean I'm not completely against that idea. He has had a growth spurt and it may be possible that he just needs more of it.  But the doctor does know that we just increased  the med in June, right? And things have gotten worse and not better. Is there a chance the med is causing the seizures?"

Nurse: "Well, I guess we'll find out."

I know that's what she had to say. She had a job to do and she did it. But, gosh......"just" increasing the med and waiting to see if it helps or is going to make things worse is easier said than done.
It also doesn't sit well with me that the neurologist calling the shots has never once met Luke. Luke's previous neuro retired. This is the new one. He's not making a great first impression. I'm almost positive he could find SOME time to see us before Dec. 10th.  Or at the very least 5 minutes to talk to me over the phone. I don't know. Maybe not.

For now, our specific prayers are:

1) We pray everyday that according to God's will, Luke will be healed and not have to endure another seizure. Ever.
2) We need wisdom. Lots of it. Anti-seizure medications are helping millions of people around the world. We're not against them by any means. We don't want to withhold anything that Luke needs. At the same time, we don't want to give him something that will make things worse.  Wisdom.
3) If you've been this journey with us since the beginning, you know we opted out of all meds in 2009 and tried some more alternative approaches with Luke. Pray the Lord speaks to us in these regards. It was very easy to make that decision in 2009 because I knew (that I knew that I knew that I knew) that God was directing us to do that. We need that same kind of clear direction.
4) Finally, just peace.  In all things. Luke belongs to Jesus. We can't watch over him 24/7. But Jesus can. And we trust Him. Oh for grace for trust him more.


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