In Australia, Father’s Day is celebrated on the first Sunday of September, and last year, we were exhausted, but pretty upbeat. Kind of..
This year was vastly different, so I have had to take some time away from here.
The neurologist who saw Thomas in the ED was also pretty much on-board with the ADEM diagnosis. https://en.wikipedia.org/wiki/Acute_disseminated_encephalomyelitis) is a good reference for it. And I wasn’t to cancel our European trip yet: “The steroids should work quite quickly, and if he responds the way we’ve seen kids respond, you should still be able to head off in 10 days time.” “What?? Really?!” Thomas was visibly impressed, and relieved, too. Obviously, though, tests would need to confirm that, as well as rule out other possible diagnoses.
Over the next couple of days, investigations galore were performed. They needed 3 ‘clear’ lumbar punctures – no lymphatic or other cancer cells or infectious microorganisms to be found – before they started him on high-dose steroids, aiming to arrest the inflammatory & demyelinating process. Done – all clear. Only inflammatory changes could be found, confirming ADEM. Yay!
The danger of the high-dose steroids is that because steroids inhibit the immune response, if you have an infection, or a cancer, this can kill you. Because you’re stopping your body’s defense mechanisms. The other issue with high dose steroids is you get a ‘Roid High (Roid Rage is the violent expression of the syndrome), and become ‘unmanageable’.
They gave Thomas his first mega-dose of MethylPrednisolone on that first Friday afternoon after admission to hospital. He’d relinquished his control over his fate, initially in shock, but relatively agreeably, with relief, over the last couple of days. “I have accepted the sick role well, I think” he said. Repeatedly.
As the steroids went in through the drip, his mood became more buoyant, & chatty. He was great with the girls in the afternoon, and I then took them over to a friend’s house for the evening, before heading back to the hospital. His parents came in to visit, and we were all a bit upbeat – the news was good, Thomas looked & sounded better, a bit fidgety and animated, but nothing too bad, & we all started to have hopes. Then he started talking about going to Europe in 8 days time.
His mother said No!!! “No, you’re not going away! You need to stay here!” Thomas blithely ignored her concerns, & kept talking about going to Europe. He was high on steroids, but she didn’t know that. And so she lost it. This tiny little 75 year old woman lost it so badly that she picked up that heavy hospital bed at the foot, with Thomas lying in it, and shook it & slammed it again and again, screaming at my husband, her 46 year old son, that he was to stop this nonsense talk. Then she turned to me, shaking her fist in my face, hissing “I will Get You!! I will get You!”
After she’d stormed out with my father-in-law in tow, I looked at Thomas, and he smiled cheekily. “Ooops” and giggled.