Saturday, February 27, 2010

Going For the Gold

I guess with all the excitement of the Olympics, Collin really caught the competitive spirit and wanted to set his own record - maybe for most hospitalizations in six weeks.

That's right. Yesterday afternoon, we found ourselves driving Collin down to Children's Hospital yet again. Ever since starting the ketogenic diet last week, he just hadn't been himself and seemed to be getting progressively more lethargic and unresponsive. After a few episodes yesterday when I literally could not wake him up, I decided it wasn't worth the risk and took him in.

All of his initial blood work came back within normal range, which indicated that he's not having a problem with the diet itself. For the past week, however, we had been reading and hearing about how the ketogenic diet can affect blood levels and/or potency of some antiepileptic drugs in some children. This test takes much longer to get back and we still don't know the levels.

We ended up agreeing to be admitted overnight, mostly so we would be able to see our neurologist the next morning. This was actually a pretty good tradeoff, because we got to see how Collin did on the monitors overnight (no problems), which made us more comfortable about going home, and because talking things over with the neurologist is always a hugely positive thing. The same was true today. He listened to all of our concerns, answered all of our questions, honored all of our requests, helped us design a satisfactory plan of action, and just generally made us feel more empowered and at ease. And that is why we call him Dr. Awesome, people.

Last night, we skipped Collin's evening dose of clonazepam to help get some of it out of his body. He didn't sleep well and even though he had a brief period of wakefulness and interaction in the morning, he sank right back into his scary-deep-sleep/seizure pattern and ended up having about 40 seizures this morning. The interesting thing, though, is that they had grown increasingly minor and then he was able to fall into a good sleep on his own - with no extra meds. I'm choosing to take this as a good sign. We are also starting to wean his Keppra tonight. We'll give him a day or two to see if we see any improvements and then go from there.

I'm so hoping that we will see changes soon. It has been tremendously difficult to see Collin passed out and not himself these past ten days. I miss him. It makes me think of those days back in August when Collin was in his Topamax coma and we waited in eager anticipation for the magic time in the evenings when he would open his eyes for a few minutes. Like so many things this past year, I'm not sure how we survived that.

We definitely set a record for shortest, smoothest hospital stay, which was a nice change after the past month. We were in and out in exactly 24 hours and nothing went wrong the whole time we were there. Unless you count Collin's disturbingly huge green poop at 4 this morning that required changing his clothes and bedding. I don't know what it is with that boy and medical settings.


  1. Seriously, have we got Dr. Awesome a t-shirt yet?

  2. I'm glad the hospital stay was such a positive thing - sounds like it definitely got you some peace of mind - at least about how his little body is handling this diet. Sing Collin a song for me and tell him we love him.

  3. Here's to a new week and a new month!
    I've been thinking about you lots, sending lots of good energy and thoughts.

  4. Good luck with the Keppra wean. Hope the events of the last few weeks are the start of the turning point for seizure-free days. Will continue to pray. Congratulate yourselves on being very astute parents.

  5. I think a lot of Bertrand's lethargy is due to Keppra too. He sleeps or stares most of the day--and I don't think all the stares are seizures because he responds. He is supposed to be on 400mg x2 daily--800mg is an adult dose! Unfortunately, our neuro wants us to increase it rather than decrease it. :( I've gone rouge and slowly weaned him down to 700mg with no increase in seizures, and going down to 600mg this week. Fingers crossed for both of our beautiful baby boys!