When we got there the photographer really expected Bennett to be able to smile and giggle and respond in a much more interactive way than he was able to. We had to jump up and down with props and noises and practically scream to even really get him to look at us--let alone crack a tiny grin. I think we maybe got one full smile the entire session, but for the most part it was a dead-pan blank stare from Bennett.
I don't know if it was just because this was the first time someone had vocalized that they expected him to respond more than he naturally did, or if it was because this was the first time I'd been feeling semi-functional enough to engage with Bennett in this energetic of a way since early July, but I walked away from the session feeling pretty unsettled. We've always said that Bennett's a "serious" baby, he's just "taking everything in", you really have to "work for smiles" from him, etc. But everyone had reassured us that babies develop on different timelines and they all catch up eventually so it wasn't worth losing sleep over. Of course, this was all before his brain regularly spazzed out on him and he was put on anti-seizure meds meant to essentially shut down his brain.
At this point I went home and started researching the developmental milestones a little more vigorously than I had before and I finally concluded that Bennett was about 3 months behind on most of them--if not more on others. Even still, I know babies can have a range of about 6 months where they could hit the milestones late and be totally fine, so I still wasn't freaking out yet.
The freakout came a couple of days later when after I had done some of my own tests with Bennett (called his name to watch for his response, tried to engage him in interactive play, watched if he caught himself when he fell, watched his attempts at crawling more closely, etc.) and was flipping through old videos on my phone of him pre-seizures that I started to realize that we weren't just dealing with slowed development--he had actually regressed since the seizures started. I didn't remember that before his first seizure he was mimicking our sounds and facial expressions, smiling spontaneously and with just the tiniest stimulus, laughing regularly, and checking in with us while he was playing or exploring. I honestly thought that he had never tried to talk at all and rarely smiled or responded to us because that was all I could remember since the seizures started.
My heart broke when I watched the video of him on the bed of our hotel in Toronto in July (we were there for an MFT conference I was presenting at) smiling and giggling, copying my sounds, and trying to communicate so eagerly with me. How had I forgotten how my happy Bennett used to be? How had I blocked all of this out of my memory? I guess when you're living with your baby every day you just assume their progress will be forward, not backward, and since the regression was probably subtle over the months, it was easy to forget the skills he'd once had. But now it was becoming clear to me that something had happened with him when the seizures started and he was now regressing developmentally.
In the seizure-world, you learn fast that the answer to almost everything is "we don't know", because we basically don't know anything about why, how, or what happens when someone has a seizure or when, why, how, and what medications work to stop them. The one thing that had been made clear to us by the professionals, though, was that as long as his development remained on track and we weren't noticing any huge changes after the seizures they were probably benign and not causing damage. So to acknowledge that I thought he was not only delayed, but had actually regressed from where he'd been pre-seizures was terrifying, to say the least.
When there's a developmental delay and seizures together, the likelihood of there being a genetic cause like a specific seizure syndrome skyrockets (as opposed to this just being benign childhood epilepsy he'll grow out of). This is bad news because the seizure syndromes recognized right now range anywhere from being a mild lifelong inconvenience to growing out of the seizures after childhood, to promising a total lifespan of about 2 years. And of course there's no gauranteed way of knowing if your child has a specific syndrome or not and they probably won't fit the exact description for any of them, so you find the one that seems closest and go from there, essentially. There is genetic testing you can do which will highlight certain syndromes which are known to have something to do with certain gene mutations or deletions, but even these are only accurate about 80% of the time.
The other complicating factor is that anti-seizure meds are all basically renowned for causing developmental slowing or delays as well as grogginess, sleepiness, irritability, etc. So there's a possibility that Bennett's regression actually has more to do with the meds we put him on than the actual seizure activity he's had. But there's no way to know that unless we take him off the meds and see a difference--which is a risk because then he may start seizing regularly again, and for all we know, it has nothing to do with the meds and he's just got a seizure syndrome that causes developmental delays as well as seizures and this is just something we have to live with forever and can't really do anything about.
Either way, we started with Kids on the Move, which is the birth-3 year early intervention program here in Utah for kids with developmental delays, autism, sensory processing issues, etc. They came and did an assessment for free to see if Bennett qualified for services and he definitely did, so we've been seeing someone every week since we started and are about to set up his different therapies and classes to help with his development as much as we can. I'll write about the different steps of that process separately because I want to record it all while I still remember it.
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