May 3, 2010

Update: Irritable

It's a daddy post tonight because Bertrand defeated Cristina today.

ACTH-powered Bertrand is not something we were really prepared for.

He's almost constantly wimpering or crying. Holding him no longer comforts him completely, but it clearly helps him. He breaks into what would be tears if you try to put him down. The usual remedies like his favorite books and toys have little effect. I could only get him to sleep tonight by leaving his iPanda playing low-volume music.

I feel like I'm constantly searching for something else to comfort him, knowing that it's probably not going to make him happy either. I think Cristina feels the same way. Parents like to be able to comfort their child, but we can't ever seem to provide him much relief. This ineffectualness gnaws away at us.

He's hungry and thirsty all the time, but he refuses to drink water. (He's never liked it; I think it's a texture issue.)

So, to keep him from ballooning up, we've started mixing his Ketovolve with "thickened" water (which looks and feels like snot) and we're feeding him as frequently as he wants. It's about the only thing that's bringing him any peace right now.

The injections themselves are tough on all parties.

The needle is really tiny, but I guess that's because if we used a big needle, he'd have holes all over his legs. The problem is that we're injecting a cold gel, and it takes what feels like an eternity to inject it all. Meanwhile, we have to hold down an extremely pissed off Bertrand and keep him still.

I've already hit bone, bent the needle and had it knocked out twice.

But, I do think I'm getting better at it.

Tomorrow is ACTH Day 4.

Bertrand's seizure count today was pretty low compared to yesterday. Apparently, half of all ACTH patients go seizure free by day 4.

Our fingers our crossed.


  1. I hope it gets better soon, hang in there.

  2. Sounds like a rough few days... I'm keeping you guys in my thoughts.

  3. I'm sorry, guys. I really do understand.

    We were told to let the gel sit out briefly so it would go into and out of the needle more easily. It did seem to help.

    Thinking about you and B.

  4. YOu're not alone. Marissa's done two courses of ACTH. It didn't keep working for us other than 17 days during the first course, but it does work for most of our little seizure children.

    Good luck! Warming the gel a bit does help.