Hi @lisalucier, thank you for your kind words and support.
My son was diagnosed with a 'mega cisterna magna' during our 20 week ultra sound appointment, and we have since continued to keep an eye on it. It is considered a normal, isolated anatomical variant (which many folks have surprisingly, they just don't find out until they need a brain MRI!)
We had his routine Brain MRI this past week, and this time we had a new neurologist (our other one retired). While the trajectory of his mega cisterna magna is still charting normal, this time the neuroradiologist highlighted these T2 hyper intensities (noting unchanged from two years ago, so the other neuroradiologist didn't report it in the findings). When I asked our new neurologist what this could mean, it was shared more than likely they were prominent perivascular spaces and/or gliosis.
As part of this, he was diagnosed with ADHD and Apraxia of speech. Prior to the new Brain MRI test results, we trialed an ADHD stimulant (Quillivant) that over the course of three days, significantly regressed his behavior and it took him a while to return back to his 'normal' hyperactive state.
When I asked the neurologist the significance of these findings, there really wasn't much of a response or understanding as to why he has these prominent perivascular spaces and how they could be impacting his behavior or even apraxia, or if the medications we are trialing could harm him more vs. help. I know these can be biomarkers for small vessel disease, a dysfunctional glymphatic system, etc. So perhaps the slowing of his glymphatic system means he's not getting proper rest at night, causing more metabolic waste to build up in his brain, or, an indication of higher risk for stroke... or, perhaps the spaces themselves based on where they are located are the root cause of his dysregulation and apraxia. So many unknowns... but if I just knew what diagnostic tool(s) could be used to identify the underlying pathology, and the right MD to help (perhaps it's not neurology) to obtain a second opinion, I'd sleep a lot better at night on this incredibly already very hard journey.
Thanks for reading (i.e., listening), and tagging others who may have experience with this.
Please take him to a leading children’s hospital neurologist. Don’t spin round and round. You