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: Zoe - A bad day. Diagnosis doubts. What the future holds.
Things with Zoe are not well. Her episodes look worse and she is now very clearly behind on her development (missing milestones), and that's been confirmed by our Pediatrician a couple of weeks ago and our U of M Neurologist today. What seemed like a clear Sandifer's diagnosis just over a month ago is now in serious doubt, so the remaining doctors are trying to figure things out the hard way now: She'll be going in for Fundoplication surgery soon in an attempt to stop her reflux, and then see if that stops her episodes and gets her overall development back on track. It's really our only remaining play, as we've done literally everything else you can do (from scans and tests for epilepsy to medicines and treatments for reflux - nothing resulting in anything concrete to help her or diagnose her.)
If the surgery fails (which it might - it only has a 60% success rate, depending on what article you read - plus they have no idea if the reflux is truly the 'cause of all of her other problems) then we're back at square one trying to think of something else. I wish I had better news to share with people when they ask about this because we have so much support and optimism always pouring in, but it's just bad right now. She's in pain all the time and she's 6 months old with the skill set of a 2 month old. That's just the way it is. Still, I really appreciate everyone's inquiries and support.
There's more to the story, but the details go on for years so I won't get into all of them. In short, we'll also be getting her a hearing test soon, and revisiting the eye doctor in Feb., among other things. With as bad as things are with Zoe, it's really tough to tell what's working right and what's not, so you've just gotta keep ruling things out, just to make sure.
We'll also be contacting Early On so we can get some help moving her development along as best we can. On Zoe's bad days she's all episodes and sleep, so there's not much we can do on those, but on good (episode-free) days she seems to have the strength to try, so we'll just have to make the most of that time so that she can hopefully start accomplishing a few of these milestones (like sitting up, rolling over, grabbing objects, etc.)
The Neuro doctor today also spent a lot more time than we would have liked talking about Infantile Spasms. That is definitely what her episodes look like on the surface, no question about it (and that diagnosis would explain her lack of milestone development), plus we had fresh video to show him which illustrates that her episodes look even more severe now than even a month ago. But obviously all of the other doctors we've ever seen (including two other Neurologists) and hospitals have thought of this before, and it was ruled out after 3 - yes 3 - normal EEGs including a 24 hour video EEG (as well as numerous other brain scans). Still, this Neurologist says that if we have no luck with her reflux surgery (which he definitely wants us to do first, ASAP), that we'll have no choice but to have yet another EEG and check for it again. We'll cross that bridge if we have to come to it, but we definitely don't want to. Infantile Spasms are a life sentence - they're not like other forms of epilepsy that can be treated with medication and fade with age. If Infantile Spasms were the diagnosis, she would never be normal (mentally retarded, at the very least).
-m
Tags: fundoplication, infantile spasms, sandifer's syndrome, surgery, zoe
Things with Zoe are not well. Her episodes look worse and she is now very clearly behind on her development (missing milestones), and that's been confirmed by our Pediatrician a couple of weeks ago and our U of M Neurologist today. What seemed like a clear Sandifer's diagnosis just over a month ago is now in serious doubt, so the remaining doctors are trying to figure things out the hard way now: She'll be going in for Fundoplication surgery soon in an attempt to stop her reflux, and then see if that stops her episodes and gets her overall development back on track. It's really our only remaining play, as we've done literally everything else you can do (from scans and tests for epilepsy to medicines and treatments for reflux - nothing resulting in anything concrete to help her or diagnose her.)
If the surgery fails (which it might - it only has a 60% success rate, depending on what article you read - plus they have no idea if the reflux is truly the 'cause of all of her other problems) then we're back at square one trying to think of something else. I wish I had better news to share with people when they ask about this because we have so much support and optimism always pouring in, but it's just bad right now. She's in pain all the time and she's 6 months old with the skill set of a 2 month old. That's just the way it is. Still, I really appreciate everyone's inquiries and support.
There's more to the story, but the details go on for years so I won't get into all of them. In short, we'll also be getting her a hearing test soon, and revisiting the eye doctor in Feb., among other things. With as bad as things are with Zoe, it's really tough to tell what's working right and what's not, so you've just gotta keep ruling things out, just to make sure.
We'll also be contacting Early On so we can get some help moving her development along as best we can. On Zoe's bad days she's all episodes and sleep, so there's not much we can do on those, but on good (episode-free) days she seems to have the strength to try, so we'll just have to make the most of that time so that she can hopefully start accomplishing a few of these milestones (like sitting up, rolling over, grabbing objects, etc.)
The Neuro doctor today also spent a lot more time than we would have liked talking about Infantile Spasms. That is definitely what her episodes look like on the surface, no question about it (and that diagnosis would explain her lack of milestone development), plus we had fresh video to show him which illustrates that her episodes look even more severe now than even a month ago. But obviously all of the other doctors we've ever seen (including two other Neurologists) and hospitals have thought of this before, and it was ruled out after 3 - yes 3 - normal EEGs including a 24 hour video EEG (as well as numerous other brain scans). Still, this Neurologist says that if we have no luck with her reflux surgery (which he definitely wants us to do first, ASAP), that we'll have no choice but to have yet another EEG and check for it again. We'll cross that bridge if we have to come to it, but we definitely don't want to. Infantile Spasms are a life sentence - they're not like other forms of epilepsy that can be treated with medication and fade with age. If Infantile Spasms were the diagnosis, she would never be normal (mentally retarded, at the very least).
-m
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