Mark Nicholas ([info]cosmicity) wrote,
@ 2008-10-23 21:53:00
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Entry tags:zoe

Zoe update update
Saw our pediatrician today. Here's a list of doctors we will now be going to see, in order:

Gastroenterologist - Acid reflux check (recommended by sleep study doc.)
ENT - Throat check. (recommended by sleep study doc.)
Ophthalmologist - Check her eyesight. (The only 4-month milestone the doctor thinks she's not meeting yet is the ability to track objects with her eyes.)
Pediatric Neurogeneticist - Looking for genetic brain diseases and such.

And we also - and this is my favorite - need to find an infectious disease doctor. Why? Oh, just in case every single doctor at all 3 hospitals (and the pediatrician making this recommend) missed that she had encephalitis, which she (our pediatrician) thinks is totally possible. Yeah. If it's that one, the damage is long since done and Zoe's screwed. My google searches show that it's unlikely, though. MRI we had done should have caught it. She never showed any other symptoms (like fever) and other stuff that babies typically show. And it usually happens within 2 weeks of birth, which were actually Zoe's most normal/typical weeks of her life. Still, REALLY fun to go to sleep tonight thinking about.

-m


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[info]miss_ania
2008-10-24 02:20 am UTC (link)
I was thinking about it a while back and I thought maybe it could be a vision thing that no one had caught onto yet, but I didn't know how it would tie into the fact that she had seizure-like episodes 'cos I'm not a medical professional or anything like that.

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[info]cosmicity
2008-10-24 02:23 am UTC (link)
At this point, I just have no clue. I'm just scared all the time thinking about the possibilities. :-(

-m

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[info]miss_ania
2008-10-24 02:29 am UTC (link)
I'm still pulling for Zoe here. My best friend's boyfriend used to have seizures when he was younger and she says the doctors could never figure out what they were caused by either, but he grew out of them. That story's probably not any consolation and I know it's scary as all hell for you both but I am still keeping positive thoughts. I don't think that she has anything horrible.

Edited at 2008-10-24 02:30 am UTC

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[info]cosmicity
2008-10-24 02:37 am UTC (link)
Every story like that is a little bit of consolation. We need to hear about the positive outcomes too, because doctors do tend to only think of the negative ones. Thanks for that. :-)

-m

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[info]serpent_sky
2008-10-24 01:07 pm UTC (link)
I REALLY wouldn't worry about encephalitis. When they start grasping at straws, they pull shit like that out of their asses. It really doesn't sound like she has the symptoms of that at all -- and I really think with all the tests they have done, they would have caught it. Especially when they re-reviewed things after the study that showed it wasn't seizures.

Christ. I'm so sorry they're doing this to you. I know, on a different scale, what this is like... every time they cut a "suspect" mole off me, I get to go through a week or two of "hey! maybe I have cancer again!" even though it's unlikely, it's also not escaped my brain that my health has generally been awful since the second run with cancer [the skin one.]

Just make sure you and Sara are taking care of yourselves through all of this. I know it's hard, but you definitely need to do that and make sure you're doing as well as you can, okay?

*hug* I'm thinking of you guys.

What did they say about anxiety and panic?
And what about allergies? Have they tested her for things beyond the lactose intolerance?

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[info]cosmicity
2008-10-26 01:15 am UTC (link)
We've had to prioritize doctors, so we've got acid reflux and eyesight doctors lined up first. Anxiety/panic attacks in a baby would probably need a trigger, so if it's reflux or even something else that's similar, then yes, it's likely the "episodes" are panic attacks linked to the reflux pain.

We will get to an allergist/asthma doctor too, definitely. It's just further down the chain of doctors. She hasn't been tested for anything yet besides an intolerance for milk proteins.

-m

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[info]rob_danger
2008-10-25 06:52 pm UTC (link)
Mark

You have a world of friends family and fans who constantly have you and your family in their thoughts. My heart goes out to you and all the hard work and heavy emotions you all must be feeling.

Always I pray for the best,

robby

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[info]cosmicity
2008-10-26 01:15 am UTC (link)
Thank you so much. We really appreciate it. :-)

-m

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