Thursday, March 11, 2010

True Test

This is Collin's 12th day without seizures.

Both of Collin's neurologists are of the opinion that he has seizures in cycles. I disagreed because only one of the instances they're referring to happened outside of an identifiable external stressor. But once they said the words, I haven't been able to totally disregard them. As one of the neurologists said, "The true test of whether the ketogenic diet is actually working will be in a few weeks when we see if he keeps cycling." So, now that we're approaching the two week mark, I find myself getting nervous. I'm watching him out of the corner of my eye when he sleeps and listening more closely to the monitor. We're still continuing with the medicine weans, however, until something happens that convinces us to stop.

Another thing I'm nervous about is taking Collin to the pediatric dentist tomorrow. It probably seems ridiculous after all of the other things we've faced, but you can get used to anything and I'm used to the neurologists and geneticists and hospitals. The dentist is new and I don't know what to expect or how to prepare for it. Collin has ground away almost half of one of his top teeth and I have no idea what they do for babies in this situation. And with the ketogenic diet, he has lots of restrictions regarding what they can and can't put in his mouth. And it's not like at the grown-up dentist where they can just tell you to open wider and move your head in between ridiculous questions about your personal life that you can't even answer because your mouth is stuck open. But something has to be done. One part of the tooth has worn away up to the gum and it's just not a viable option to keep a pacifier strapped to his face during all of his waking hours. So, we'll see.


  1. Yea for 12 seizure-free days. Was wondering how the diet was working so far. Will pray for the dentist appt. Don't want a dentist resurrecting a stinking seizure! Maybe Collin has dreaming about that banana he had a few weeks ago - I will pray for you guys today. Keep us posted.

  2. wohoo (in a whisper). Not going to be the one to taunt the seizure monster.

    Here's all I think we know for sure about Collin and the dentist. It's a doctor's office so you should probably take extra diapers and a change of clothes. :)

  3. Will be praying the dentist has good news and is patient and creative with how to help Collin's tooth. And also for your nerves with going. I'm praying that Collin breaks the seizure cycle (if there is one). Love you all.

  4. I hope the dentist's visit was helpful but uneventful. I've been thinking about you. Here's to another happy, seizure free week!