The Unit. Day 63

You know that saying; that things can’t get worse? Well that’s turning out to be a load of old codswallop. After the whole CPA meeting surprise (see yesterday’s cheeky little number for details) and, as yet, no sniff of what the future might hold for LB (Don’t. Just don’t even mention support), I went to visit him yesterday evening. He was in bed, dozing. With a bitten swollen tongue. Signs of a seizure. Or size of an elephant it might well have been.

The bitten tongue had been noted and Bonjela on order. The seizure dimension overlooked. LB’s seizures have always worried the pants off me. Not least because it took about four ‘in your face’ tonic clonic epics before the docs would even entertain the idea that he might have epilepsy. We were tripping over that old ‘he’s got to learn to manage his stress/star charts anyone?’ chestnut (a.k.a. the learning disability trump card) for months.

The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe.  I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.


Layers and layers…

Still a bit grumpy this week, sorry. Dunno why. Unfortunately, the grumps weren’t helped earlier by remembering the experience of LB’s epilepsy diagnosis last year.

I won’t go over the whole sorry, sad story but just focus on a tiny part of it. The GP. Just to illustrate the layers and layers of crap and nonsense that parents of disabled children (and others) are subjected to.

LB was discharged by paediatric neurology after investigations into some absent type seizures he’d had. They said he needed to learn to manage his anxiety.

Next thing, I get a call from his deputy head teacher, while I was at work. She passed the phone over to the paramedic who reassured me that LB was now conscious after full tonic clonic seizure but on his way to A&E in the ambulance….

Surely pretty high up on ‘parents’ worst nightmare’ scale?

He was discharged after six hours in A&E and the next day I rang the (random) GP and filled her in with what had happened.

“ I wondered if you could re-refer LB to neurology?”
“Well you’ll have to bring him in for an appointment..”
“Well I need to see him before I can make a referral.”
“Why can’t you just refer him?…He gets very stressed at the doctors and has obviously just had a pretty stressful experience.”
“Well I need to see him before I can make a referral.”
“Why? Why do you need to see him? I don’t understand. What is seeing him going to do?”
“I need to take his blood pressure.”
“WHAAAAA???? Whaddayamean????? He was in A&E for six hours yesterday having everything checked. WHY DO YOU NEED TO CHECK HIS BLOOD PRESSURE???”
“I’m sorry Ms Sarasiobhan, but I cannot make a referral without seeing the patient. It would not be accepted by the practice.”
“Are you listening to anything I’ve been saying? He had a referral to neurology, after being seen by the GP six months ago. He spent 6 hours in A&E yesterday after a huge seizure. Why can’t you just write the letter???”
“If I was to write the letter not having seen him, I’m afraid I would be lying. And I’m not prepared to lie.”
“Don’t lie!!! Just say what happened. He shouldn’t have been released in the first place without proper investigations, he needs to get back there ASAP. Why can’t you just make the referral?????”
Sniff. “Well, I’ll write the letter but I’ll have to phrase it in a particular way. I don’t think it will work.”

Four weeks later we get a letter from the hospital saying that LB had turned 16 since the original referral. He needed to be re-referred by the GP to adult neurology.

Grumpy? I dunno.

The egg of trust and the GP

LB had an appointment with the GP after school today. He’d had a liver function test to check out the medication for his newly diagnosed epilepsy.  The doc said that there was a bit of a problem because the blood level showed that the drug was at a level that suggested it wasn’t being effective.  Instead of a level (of something but no idea what) of between 40-80, LB’s blood showed 25.

The options were to up the dose to a level at which it was effective, continue the dose (but it wouldn’t be achieving anything) or stop the dose because, as it wasn’t working and he hadn’t had a seizure for three months, he didn’t need it. It was up to me to decide.

Whoa. Hit me with the first example of non paternalistic decision making I’ve ever experienced when the stakes are so high, why don’t you?!  The potential of tonic clonic seizures or even stronger medication with hideous long term side effects.

I got the doc to talk me through it all again, and once it became clear that upping the medication was only really treating the medication, as opposed to preventing seizures, I decided to keep the dose as it is until we met with the neurologist again.  I’m a bit suspicious of stats at the best time and didn’t really buy the 25/40-80 stuff. So the outcome of my first patient weighted decision making; defer the decision.

So home, kettle on, dig out school diary to find out the latest happenings in the sixth form.

“LB has been brilliant today. He has an egg to look after as part of our work on trust and bring back tomorrow hopefully in one piece”.

“Wow! An egg of trust? LB! Where’s your egg matey?”

“In the bin.”

“What? Whaddaya mean???”

“It’s in the bin, mum.”

And it was. Crushed. Barely retrievable.

“Why did you chuck the egg away, LB?”

“Cos I’m ANGRY WITH THE SCHOOL. They wouldn’t let me do what I wanted to do”, he fumed.

“Yeah, well sometimes you have to do what you’re told, matey”, I said, putting on a pan of water to boil a new egg of trust.  “And sometimes you  wish you were told what to do…”



The panic button

I bumped into an old mate, Nicola, in town today on the way to work. She, too, is in that horrible, horrible space between children’s services and sweet fuck all.  After a quick catch up (that was pretty negative because of the sweet f.a. situ), she asked if I’d heard of seizure alert dogs. Her son, 17, has developed epilepsy, she doesn’t want to put him on medication and her son’s consultant ain’t very happy about this.

“Well, funny you ask because….” I started.

“Ha ha ha ha!!!!!! You always know something funny about things, Sarasiobhan!”, she laughed.

“…I read about this woman,” I continued, “she had a seizure alert dog who was brilliant. He sensed when she was about to have a seizure and nudged her, so she could take medication. She had a panic button installed in her flat that he could press with his paw to call the paramedics if she became unconscious…”

“Wow, that is amazing.  I will definitely look into it for Billy”, said Nicola, paying proper attention at last.

“The funny thing was, if he felt she wasn’t paying enough attention to him, or felt like a bit of attention from the paramedics, he would walk over to the button and stand, with his paw raised, ready to press….”

“Hahahahahahahahahahahahahahaha”, Nicola howled, hysterically hanging on to my arm. Her laughter was infectious and we stood, a couple of hysterical women, in a sea of commuters and Summer school students. Bit of a chuckle and tonic.

More details of the story of the young woman with the seizure alert dog, and other young people’s experiences of epilepsy, can be read here.

The EEG and the asylum

A freshly hatched post for once.  Laughing boy had a mobile EEG unit fitted this morning. The neuro person, Noreen, was very chilled as she carefully superglued the electrodes to his scalp. Once LB had gone through his usual questions – “What’s your name?”, “Where were you born?” “How old are you?” “Have you got a boyfriend?” “How old is he?” “What does he do?” – he went back to chuntering about other stuff. I realised he was getting naffed off with the lengthy process when he started going on about asylums, straitjackets and an evil attendant called Noreen. Continue reading