Back in the ED again

Last Tuesday (April 13), Lively got his last dose of ACTH. He was miserable with this, so we were thrilled to move on. On Friday (April 16), we increased Lively's topamax to what should be his maintenance dose. We knew that the ACTH was stimulating his appetite, and that the topamax may decrease his appetite. Lively had gotten huge though, and I looked forward to his slimming down a bit.

As soon as we stopped the ACTH, Lively not only seemed so much more active, and happier, but his appetite decreased immediately. When we increased the topamax, his appetite hit an all-time low, so that Lively transitioned from starving, insatiable baby to one who pretty much refused all food and drink within a few days.

I let things get away from me. Lively nursed a few minutes yesterday, and ate a couple bites of pureed peas at lunch, and fell asleep. When he got up from his nap around 5 pm, I realized he hadn't really had a wet diaper all day. And in looking back over the previous 2 days, I realized he'd only had 1 or 2 wet diapers a day even then. Still, he refused to eat or drink. I decided to try to rehydrate him orally at home with Pedialyte and breast milk from a 5 ml syringe. I got about 4 ounces in him (that's 24 squirts with the syringe) and he threw up all over me. So I thought, some must have stayed in there, we'll give it one more try. I cleaned him up, cleaned me up, force-fed him 1 ounce, and, as Annie would say, BOF!

Here's a photo I took of Lively a couple of hours ago:

He doesn't seem to have any kind of underlying infection. His white blood cell count is normal, and thankfully, my refusal to acknowledge that he was becoming dehydrated has not seemed to affect his kidneys (normal BUN and creatinine). The ED resident (that's emergency department; we don't call it an ER anymore) spoke to someone in pediatric neurology (not Lively's doctor, she's not here) who thinks the problem is unlikely to be related to the topamax. I'm not sure I agree. I trust Lively's neurologist and we have an appointment with her tomorrow, so I'll believe whatever she tells me.

Lively has had 2 IV boluses and hasn't peed yet. He nursed a little, which is good, but by a little I mean 2 or 3 minutes tops. If he doesn't pee in the next 2 minutes, he's going to get his third bolus, and we can't go home until the hunger strike is over; otherwise, we'll just have to come right back here. We haven't been admitted to the hospital yet, but I think that's probably coming soon.