At some point last year, I was noticing some interesting changes with Ryan. I wouldn't necessarily call them "regressions", however, these changes were a bit concerning. He was starting to fall over while sitting on the ground. It wasn't really a sharp or dramatic fall; more like a slow motion ease to one side, but without catching himself with his arm. Sitting independently, without falling, was a skill that he had mastered a long time ago, so I wasn't sure where the balance challenges were coming from. I would also notice him leaning in his high chair on one side. Here are some examples of what I was seeing.
|He wasn't always leaning to one particular side,|
it was both ways.
|He slowly tilted over to the side and was|
resting on his elbow.
I reached out to his therapists to see if they have any ideas or if they had noticed it. They had. They advised me to discuss it with his neurologist. We, coincidentally, had an appointment coming up with his neuro so the timing worked in our favor. At the appointment, we discussed what we had noticed. I must also mention that around the same time, Ryan had been sick - minor things - but had been on some antibiotics, so we weren't sure if that could have possibly been a contributing factor, or maybe if something was going on with his ears. Ryan's neuro wanted us to do lab work to see test and see how the meds were doing and then he mentioned possibly doing an overnight EEG, just to confirm whether there was something going on in his brain to which we weren't privy.
The blood work confirmed that the meds were at good levels and there were no concerns there, so we moved forward to schedule the EEG, which meant to a trip to the hospital to stay overnight. We got scheduled for Jan. 3rd and Ryan and I checked in at 8:30 AM. They took us up to the room and then not long after that, he got his electrodes hooked up to his head.
|Taking everything in stride!|
|Such a sweet boy|
Once he was all ready and capped up, we went back to our room and essentially just hung out all day. We spoke some to the nurse when she would come by, and I had my work laptop there so I was emailing and working most of the day while Ryan napped and watched tv. In the meantime, the EEG was capturing all of his brain waves and its activity and there were people there somewhere monitoring what it was showing.
We slept there overnight, and although I didn't notice any specific "seizure-like" activity, I did wake up around 1 AM to sounds of him moving around and making some very quiet noises. I noted that to the nurse in the morning and they were able to go back to the record of his brain waves around 1 AM to rule out a seizure, which they were able to do. They did see on his EEG that he awoke, briefly, but did not have a seizure. That was a relief!
Ryan's neurologist was the doctor at the hospital that week (intentional scheduling on both of our parts) and he came during rounds in the morning to talk to me. He said that he didn't see any seizure activity, and nothing really out of the ordinary for Ryan. Based on some of the balance concerns that we had, he anticipated that there may be some deterioration to Ryan's brain wave pattern during the night while he was sleeping, which is why the EEG was scheduled. He wanted to see what was happening to Ryan's brain while he was sleeping, especially, since we also aren't typically awake to make note of anything odd or unusual. The verdict is that there wasn't deterioration during sleeping hours, which was also a big relief. Towards the end of our discussion, he gave Ryan the green light to get unhooked from the EEG and start the discharge process.
|EEG is off!|
Time to wash the hair!
I should note, however, that Ryan's brain waves are not normal, and the patterns they make are not normal. That's just how it is for him. Abnormal patterns do not indicate seizures, but they do note that his brain is not functioning normally, as we know. One interesting thing that came out of his discussion, apart from the confirmation of no seizure or deterioration during sleep, was that Dr. Taft feels like the patterns he's seeing right now indicate that Ryan may eventually be diagnosed with Lennox-Gastaut Syndrome. I have done some reading about it, and it's not great news, to be blunt. That being said, this is only a prediction of what could potentially happen in the future, not a diagnosis! I don't want to go down a rabbit hole of reading and research right now since we don't know if Ryan will end up with LGS.
Your ongoing prayers are still requested for my angel boy. No one has a crystal ball...so we don't have the answers about his future that I long for. We can and will deal with anything that comes our way, but want the very best life for Ryan that is possible.