Mark Nicholas (![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small} cosmicity) wrote,@ 2008-11-11 15:23:00 |
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Zoe - FINALLY a diagnosis! Please watch videos.
Hooooooray for the University of Michigan hospital. In about 15 minutes this morning, the doctors at U of M were able to do what none of the other doctors or hospitals have been able to: diagnose Zoe with SANDIFER'S SYNDROME.
Why are we SO happy? Because Zoe is Neurologically perfect. Exactly where she should be. After months of being told she has epilepsy and she's missing developmental milestones and her eyesight is bad (the list goes on), we finally know she's mentally just fine.
Sandifer's Syndrome is a somewhat rare syndrome linked to GERD/Acid Reflux. Zoe was formally diagnosed with reflux via an Upper GI X-Ray on Friday, so this completely makes sense. Basically, infants with this syndrome unconsciously try to fight the pain from the reflux and the physical reaction often looks like seizures. In Zoe's case, she has the most seizure-like reaction any doctor has ever seen. She's in a league of her own.
The treatment is the same as any Acid Reflux baby would get. Keeping her upright. Using Prevacid (medicine) to cut down on the acid. Stuff like that.
OKAY. Now, I felt like it was important to show everyone what's been happening so people don't think "you had us all THIS worried over Acid Reflux?" So, I'm posting a few videos to show you what we've been seeing, and why Zoe's has been through a CAT scan, MRI, two PET scans, 3 EEGs, a sleep study, 2 anti-seizure medicines and countless hospital stays.
These are portions of episodes recorded the first day we checked Zoe into a hospital where she was misdiagnosed as an epileptic:
These are some recent odd symptoms that helped us convince the doctors (even the ones at U of M) that what they are seeing wasn't necessarily seizures. (In the first part, she's having an episode where she cuts in and out of her usual trance like state, something you couldn't do if you were having a seizure. In the second half, you're seeing an "aftershock" - twitches Zoe sometimes has post-episode that wake her from sleep every 15 seconds):
This is what a current episode from this week looks like. We still see them pretty much everyday. She's not cured. But at least we now finally know that her brain is fine and these aren't hurting her (beyond the pain of reflux, which we're working on.)
And finally, because all of this can be a bit much, and many of you have been worried right along with us for a very long time (THANK YOU AGAIN SO MUCH FOR ALL OF YOUR SUPPORT THROUGH ALL OF THIS) here is a very short video of Zoe just being, well... Zoe. :-)
Okay, gotta go play with my kid now. It's amazing to be able to think about her and not worry about her limitations anymore. She's just a normal kid with really bad reflux. Woo hoo!!!
-m
Hooooooray for the University of Michigan hospital. In about 15 minutes this morning, the doctors at U of M were able to do what none of the other doctors or hospitals have been able to: diagnose Zoe with SANDIFER'S SYNDROME.
Why are we SO happy? Because Zoe is Neurologically perfect. Exactly where she should be. After months of being told she has epilepsy and she's missing developmental milestones and her eyesight is bad (the list goes on), we finally know she's mentally just fine.
Sandifer's Syndrome is a somewhat rare syndrome linked to GERD/Acid Reflux. Zoe was formally diagnosed with reflux via an Upper GI X-Ray on Friday, so this completely makes sense. Basically, infants with this syndrome unconsciously try to fight the pain from the reflux and the physical reaction often looks like seizures. In Zoe's case, she has the most seizure-like reaction any doctor has ever seen. She's in a league of her own.
The treatment is the same as any Acid Reflux baby would get. Keeping her upright. Using Prevacid (medicine) to cut down on the acid. Stuff like that.
OKAY. Now, I felt like it was important to show everyone what's been happening so people don't think "you had us all THIS worried over Acid Reflux?" So, I'm posting a few videos to show you what we've been seeing, and why Zoe's has been through a CAT scan, MRI, two PET scans, 3 EEGs, a sleep study, 2 anti-seizure medicines and countless hospital stays.
These are portions of episodes recorded the first day we checked Zoe into a hospital where she was misdiagnosed as an epileptic:
These are some recent odd symptoms that helped us convince the doctors (even the ones at U of M) that what they are seeing wasn't necessarily seizures. (In the first part, she's having an episode where she cuts in and out of her usual trance like state, something you couldn't do if you were having a seizure. In the second half, you're seeing an "aftershock" - twitches Zoe sometimes has post-episode that wake her from sleep every 15 seconds):
This is what a current episode from this week looks like. We still see them pretty much everyday. She's not cured. But at least we now finally know that her brain is fine and these aren't hurting her (beyond the pain of reflux, which we're working on.)
And finally, because all of this can be a bit much, and many of you have been worried right along with us for a very long time (THANK YOU AGAIN SO MUCH FOR ALL OF YOUR SUPPORT THROUGH ALL OF THIS) here is a very short video of Zoe just being, well... Zoe. :-)
Okay, gotta go play with my kid now. It's amazing to be able to think about her and not worry about her limitations anymore. She's just a normal kid with really bad reflux. Woo hoo!!!
-m
