Wednesday, October 2, 2013

Epilepsy Sucks

We haven't been members of *this* club for very long, but I can already say I hate being here. Watching your child have one Grand Mal seizure (never mind 3 in a row), might be more PTSD-inducing than the worst IEP meeting. Worrying about your child's health elevates scary to a whole new level. Especially when you make the mistake I did, and Google. Or when you read what should be a bittersweet "pay it forward" story on Facebook, that ends up being just a "bitter" story to you, because it involves seizures... and death.

The truth is, I have no idea what is going on in B's brain. Neither do the doctors. His MRI was fine, which I am eternally grateful for, but it leaves us all guessing. What caused this sudden onset? What caused so many within just a few weeks? What does it mean? How will they affect him? Is this forever?

To add a whole new layer of worry, I definitely think B is having some activity that isn't being mitigated by his medication. He still sleeps with us, and I couldn't fall asleep last night because his body wouldn't be still. Everyone moves at night, but his body was twitchy, and rigid, and flailing about. It was almost like watching bits and pieces of one of his bigger seizures, if that makes any sense. It didn't look comfortable. Though he was asleep, I could tell his little body wasn't getting much rest.

Thankfully, I did think to video it. I sent 3 videos off to his neurologist this morning, asking (begging?) for answers. B has been more hyper lately, and his tolerance for anything has gone down the toilet, which I think is because he's just tired. Both my kids tend to get hyper/silly/crazy when tired, and B has definitely peaked. It has been worse since the seizures began, and isn't getting better. I am hoping there is something we can do so the seizure activity is less at night (if that's what it is), and he can get more rest. I think that would probably help with the rise in behavioral issues, too.

I do want to end this blog on more positive note, though, so here's a little victory from last night. B has severe sensory issues. So much so, that his diet is extremely restricted. I'm talking cheese sandwiches, some types of pizza, some snacks, and a few fruits. Oh, and plain cheeseburgers from McDonalds, which he would live on if I let him. Even some things I know he likes can be hit or miss, depending on the day. Food is a constant struggle, but I never stop offering different things. Last night I made pasta, which is something he never eats. I pretty much begged him to just try one noodle, and he agreed, which was a miracle itself. I added a tiny bit of teriyaki sauce to make them like the "Chinese food noodles" he claims to like, yet never actually eats.

It took a while, but he finally chose one noodle, and ate the whole thing. Without screaming about how gross it was. Without crying, and telling me he was "just kidding", and really didn't want to eat it. Sure, it took some time for him to build up enough courage to eat it (he even told me he was really scared), but he did! It was just the one noodle, but it was a HUGE step for B. I mean, huge. We are working with his OT on eating issues, but it's something like a 7 step process, from just tolerating food on the table, to plate, to smelling or touching it, etc, etc, until finally trying it, and sometimes I get a little antsy. I was so proud of B last night. I'm going to ride that noodle victory for a while.

Might not seem like much, but this is a BIG deal! 

1 comment:

  1. I love hearing about food success. Seriously -- I could use some good food vibes right now!

    As for the possible night seizures, I hope you got some answers. If you didn't, I would seek a second opinion. We ended up doing just that for Little Miss earlier this year and it made the difference between 3 grand mals a week and nothing. Seven months (knock on wood) with NO ACTIVITY. Seriously. Even if you love your neurologist (we love ours), you and B deserve answers. Hang in there!