Mark Nicholas

11:36 pm: Zoe Status
After that horrible day on Sunday where Zoe was basically all episodes and misery, Monday was an absolutely perfect day with no episodes and an extremely happy, well-adjusted baby. Then yesterday, Zoe slept like she was in a coma through the entire day. She was awake for a couple of hours tops, basically just by totalling up feedings and changings. Still, no episodes yesterday either. Every day is an extreme surprise with her, it really is.

Then this morning Zoe and I went to the Gastro doctor. Seemed like a decent day... she was acting somewhat happy in the AM. But then about 10 minutes after the doctor came in and started talking with us, she had a huge episode. Very scary, very long. The only good thing that can be said about this is that it was right in front of this new doctor, so there was no need to convince him of what was going on. He saw it better and clearer (from start to finish) than any doctor ever has.

Of course, that doesn't mean he knows what it is. After seeing it, he was surprised our Neurologists were walking away because he thought - despite extensive tests proving these aren't seizures - that it still looked like something more was going on neurologically speaking. He's seen babies have big reactions to acid reflux and such, but Zoe is on her own level as far as that goes, that's for damn sure. But he also thinks it is possible that severe reflux + severe allergies could create a sort of shock state like this. He thinks that's within the realm of possibility. And he thinks we absolutely have to try to treat those things to see if they solve the problem. So we are.

Which means that, as of today, we're switching to some ridiculously expensive uber hypo-allergenic formula called Neocate. It has absolutely no milk or traces of milk proteins in it. And we're putting Zoe on Prevacid to control acid reflux. Between those two things, we should see a difference inside of a week if this is indeed the whole problem. Of course, we're also waiting on some preliminary allergy tests they're doing from a blood sample taken at our pediatrician's office on Monday, so there may be even more allergy info in there that causes us to make further adjustments. (See: keeping our dogs or not keeping our dogs, etc.)

I like this new doctor - he's at least motivated. And he seems unlikely to give up on Zoe until he's exhausted all of the options in his field. I'm pretty sure he's going to call and harass our (former?) Neurologist and push for more possibilities too. Not like I didn't try with everything I had to get more information out of that guy, but maybe being humiliated by another doctor for giving up will do something to better motivate him.

-m

EDIT: PS - This doctor is NOT an eye doctor, but during his preliminary examination, he was able to get Zoe to track with her eyes where wanted her to using a special technique hand waving / snapping technique. This is something our regular Pediatrician has never been successful at, and I mention it because it's been a huge concern for us (and our Pediatrician) that something more (worse) than allergies/reflux is going on here. It was reassuring - if far from conclusive - that this doctor thought her eyes were functioning normally and that she appeared to be meeting that vision milestone.

EDIT EDIT: We got test results back. Blood test shows hasn't had a major infection of any kind (meaning no encephalitis, which is excellent), and allergy tests show that she's negative for basic allergies (mold, dust, dogs, eggs... the common stuff), which is actually a big surprise. But this blood test for allergies was also far from conclusive. Zoe's too young for the test, for starters (we just did it anyway), and it's not as effective as other allergy tests. Still, I guess it probably means she's not crazy allergic to everything like I was. Doesn't give us any real answers though. :-/ God, this reflux treatment just has to work

Tags: allergies, belknap, episodes, neocate, prevacid, reflux, tests, zoe