Monday
Today is Monday. And today I am exhausted. After a couple of
weeks of feeling like we were winning the battle against epilepsy, we had an
epic fail over the last few days. I can’t describe exactly how draining this
journey is; every single day is an unknown and the Lennox-Gastaut syndrome
demands every ounce of our energy in caring for B. Up until now the most prevalent seizures B has
had have been obvious. Big head or body drops, being flung backwards across the
room, being unresponsive and vacant. Distressing to watch, and time-consuming
to record, alongside the constant background decision making on what
necessitates extra meds intervention versus what B can cope with. The seizures
are so sneaky though. Once you think you have a handle on what’s going on, it
all changes.
On Thursday B needed to be woken up- for a child who
regularly wakes between 4.30 and 5.30 am bouncing off the walls and ready for
the day this was highly unusual. More alarm bells started ringing when he
couldn’t physically climb out of bed without support. He was shaking all over,
clumsy, minimally responsive, uncoordinated, unable to feed himself breakfast,
and most notable of all, unable to walk properly without someone helping him. I
wrote in his home-school communication book* so school were aware of his
presentation, and sent him on the bus. At around 11am I had a call from school,
who were concerned that B hadn’t picked up, in fact he was progressively
getting worse. It’s worth noting at this point that every time my phone flashes
up with a call from school, my heart is in my mouth. It’s almost always a bad
thing. In the early years it was usually due to a fall or bump (hyperactivity
plus clumsiness does not a bruise-free child make), nowadays it tends to be
around the seizure shit. Although I’ve never admitted this out loud, a tiny
part of me always wonders if they’re ringing to tell me the unspeakable-
whether that phone call is THE phonecall- the one where they tell me it’s all
over. That we’ve lost him.
They phoned again a while later to tell me he had fallen
asleep. I advised leaving him an hour and waking him then if he hadn’t woken
independently. Cue another call an hour later to let me know they couldn’t wake
him up. At this point we decided together to intervene with seizure meds to try
and break up whatever the hell it was that was going on, which apparently
didn’t really do much. B slept the rest of the school day, briefly woke up and
ate something, and then promptly climbed on me and fell asleep again. This
whole pattern continued until Saturday evening. On Sunday morning B was
brighter, and continued to progress until by the afternoon he was back to his
typical self. We did however begin to see some new odd movements which may be
different seizures emerging. Watch this space.
Due to a combination of poor communication, logistics,
inexperience (on both ours and the local hospital’s part), and the fact it was
a weekend (I shit you not) we couldn’t get the required EEG that would have
confirmed our concerns around B being in non-convulsive status epilepticus. So
if any of you out there are thinking about going into status, make sure you
don’t do it on a Friday in Dorset. Poole EEG department ain’t got time for that
shit. (In fairness, a certain member of Poole EEG department didn’t have time
for that shit; the other experiences we’ve had with those guys have been
great.) Non-convulsive status epilepticus is effectively a constant seizure
state- in literal terms, an actual headfuck. In NCES all of a person’s
electrical signals to co-ordinate their movement, thought processes, and
general function are completely scrambled; hence they appear dazed, confused,
lethargic, vacant, unable to perform usual skills and just ‘not there.’
Although not imminently life threatening, leaving a person untreated in this
state for prolonged periods of time will cause neuronal damage; in other words,
permanent brain damage will start to happen. In a child like B we simply cannot
afford for him to lose communication, skills and function that has taken years
to consolidate.
So, after two incredible weeks of fairly good seizure
control, the beast returned with a vengeance. It was hideous to watch, so I can
only imagine what B was going through. Lessons have been learned. Next time we
won’t wait to see how it pans out, we’ll act ASAP with the urgency that should be
applied to any child showing unresponsiveness and complete polar opposite
behaviour to their normal. Especially since this is a child with a multitude of
diagnoses and difficulties. Today I have spent time debriefing with school and
speaking to medical staff about protocol should this happen again. We’re all on
the same journey aboard the Unknown Express to Who-The-Hell-Knows-Where. The
ride is turbulent at best, soul-destroying at worst, we are all shattered, and
we seem to be off road in a place where few have been before.
Today I want to get off.
*The home-school communication book is a vital piece of kit
for children like B. Imagine sending your child to school with no ability to
communicate how their morning had been, how they were feeling or what was
happening to them at any given moment. Then imagine picking your child up from
school, asking about their day, and them being incapable of answering you. This
is where the home-school diary wins out. Every morning we write the things B
can’t say, and every evening we check out the communication from school so we
know how his day has been. A little extra piece of admin every day. Because the
universe thought we didn’t already have enough.
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