Doc Day

October 4, 2022

Happy Tuesday! Welcome back! 

Today was a medical day for Bradley and October will be a heavy medical month for Bradley over-all. He's not overly sick or anything, it's just how the calendar balances out really. Most of his specialists see him every four months or so, so this month we'll see Neurology, GI, Endocrinology and back to see the Pediatric Ophthalmology. Today was Neurology where we had some things to discuss and medicine to get refilled. 

At almost thirteen years old (Good grief - how is that possible?) Bradley is flirting with the idea of puberty and all the um - uh, joy that comes with that. The Endocrinologist has been working on weaning Bradley off of the medication that he takes for his Thyroid. His numbers have been really positive so we are all sort of cautiously optimistic that he can come off at least one medication. Today, I had a longer discussion than usual with his Neurologist about trying to not add/change a medication or increase his dose. So, what's the background on that? Every few months, Bradley has a few upticks in seizure activity. It's always somehow connected to him sleeping, almost sleeping, or just waking up. Most the time I'm not quite sure if he is seizing or not. I tend to lean towards him having a nightmare and even though he doesn't have too many actual nightmares, I always think that first. Besides, I am slow to wake up and determine if he is or is not having seizure activity. And I say activity for a reason, as he doesn't drop into a full well-defined seizure. Instead, he gives ten to twenty seconds at a time. Bradley's Neurologist has instructed us that when he starts these clusters, go ahead and give him his Diastat to break up the cluster. I am slow to use the Diastat. Yes, it will break a seizure, and I know that his Doc thinks it's safe enough for him - but these emergency use Diastat (Diazapam) stop the seizure, but they also relax and calm the body to the point that the body doesn't always want to breathe; almost like it is too much effort, so you really have to be sure you want to use it. It used to be we were to wait five minutes before we gave it, so now when he starts and then stops these little spikes, I am always waiting- is he down/ Does he need it? By the time I am headed to grab the box because I am sure, he stops. Go figure. 

Anyway, with the start of school, everything was as relatively smooth as going back to school can be, but lately we've had a couple things happening. One, Bradley is suddenly starting to fight the CPAP machine. Don't get me wrong, no one likes to wear a CPAP, but Bradley had become very good at accepting the wear. As a result, better mornings and days because his quality of sleep was so much better than it has been (like ever). But he is resistant right now. So, he's not getting the quality of sleep he had been getting. And two, he is starting to show some of those old hitting behaviors (smacking his head with his fist) and really defiant in the morning. But we aren't sure why. I have noticed that anywhere he doesn't have his movie, he is likely to fall asleep.  The Neurologist office was no exception today, and he slept in until 8:30 this morning. Definite that something is up, just have to figure what.

We don't have any answers today, but we do have a plan. Given that we don't know if he is getting hormonal with puberty, behaviors getting amped because of that - or because there is something up with the CPAP or the if he is having seizure spikes while he sleeps that is making it harder for him to wear the CPAP effectively, etc. etc. So many different scenarios. Our plan is to set him up for an overnight EEG. From that we will know if he is being affected by seizure activity and needs a different med or dosage, or if we can settle that worry and move onto Pulmonary and/or behavioral. One step at a time, but luckily, his Neurologist has been with him since the beginning, and she remains an ally to Bradley as we walk this path together. Only as aggressive as the need warrants and only as passive as Bradley's needs allow. And since Bradley hasn't had an EEG since 2013, it is definitely time to take another look. 

First get the EEG, look at the results and then make a move from there. Luckily, we do have Pulmonology set up for November. In the meantime, we wait for the EEG and keep moving forward to see his GI next week and then Endocrinology and Eyes after that. I really wish we could have one overseeing doc that helps keep all this straight, one person that could look at all the results and have an understanding of how or where all the Bradley pieces actually fit together. Ok, I mean someone not his mom who happens to have a medical degree. That would be a lot more helpful than me that's for sure. 

Anyway, today we know that Bradley is 68.7lbs... slowly climbing up that growth chart. We are thrilled that he is finally hitting the boy's growth chart at all. Even on the Down Syndrome chart he is pretty low on the percentiles, but we're working on it. I'll get the percentages from the GI next week, he's great about giving me all that data. Doesn't change a thing really, but it does help us get a visual of how he is growind and reassurance that he is thriving. 

Overall, a pretty good day at the doctor. Traffic was a bear in and out of UCLA, surprising to no one I know. For good news, slid right into a parking spot, which is saying something because that place is a nightmare for parking. Apparently, these hospitals have a common denominator in having piss poor parking. Although, at CHLA I have the option of Valet parking when there is no other...and it only costs me a dollar more at CHLA than what is costs at UCLA. It's a racket! At least the EEG will happen at the small Santa Monica clinic and not the main hospital, so that's a bonus for sure. 

All right, have a great night all. Catch you tomorrow! 

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