Daisy And Me People I meet when on my walks with Daisy

22Jun/140

The Five Second Rule

It’s an odd one that I find myself writing of Freddie having a seizure and finding so much good in it. Not the fact that he had one; a call from school just as I was heading to collect him Tuesday afternoon confirmed what we guessed on the first ring.  No the good news lies in how it developed.

Lisa and I got to the school to find Fred in his chair, in the shade of a tree, just coming around. The ‘postictal stage’ as it is medically known. How many times did we hear hospital staff use that phase? His eyes were half-open and he seemed to recognise us. This in itself was something new; usually Fred is unconscious for a while afterwards. Denise and Rose were standing over him, wiping his face and keeping him cool. Fred had got a bad attack of the jitters outside, and while they got him in his chair and had swiped him continuously, the seizure had broken though. The kids were playing around him, oblivious almost, which was great to see.

We bundled Fred into the car and drove home. At the house the man was able to walk in, dazed and confused but he made it to the couch. Poor Ruby had to be disturbed from her lying out but then she still had study to do for her final exam Tuesday. Lisa cuddled up beside Fred and he slept for the afternoon.

That was it.

No more seizures, just rest and bathroom breaks.

Fred was awake fully for dinner at six. After dinner he asked “when’s dinner?” as that meal was only lunch.

Nothing wrong there.

This was the first time in five years, I think, that Fred has gone so long seizure free, seventeen days, and hasn’t clustered when one did strike. On top of that he recovered so quickly, so much so that by Monday evening I’d forgotten the drama of lunchtime at school.

On Tuesday morning Fred could have gone back to school but we kept him home.

So many positives that Lisa and I were scared to discuss the events of Monday, in case we jinxed matters.

It must be the VNS; nothing else has changed in the last while but we’ll have to see and we won’t get our hopes up too much until we’ve had a few more days like Monday.

On Wednesday they had Sports Day at school. It was very hot and being the worriers that we are it was decided that Fred would be collected from the field at 11am, because of the heat. The heat of the day can be a trigger and it was very hot during the week. Fred actually didn’t want to go to school that morning but I persuaded him to go, with the sweetener of coming home early.

That was a mistake.

From the moment I dropped him he was telling Denise that he was going home soon, he couldn’t or wouldn’t concentrate on his schoolwork and I don’t think Ms O’Connor was too happy with me. When Lisa went to the sports field at 11am Fred was busy kicking ball and running races but he was happy to go home. The kids were unhappy that Truly Scrumptious hadn’t brought cream buns...

When I collected Fred from school on Thursday afternoon he hobbled across the yard. Denise behind him was trying not to laugh. During both breaks Fred had been playing with the older girls, ignoring Denise’s instructions to slow down during tag. While looking over his shoulder to check on Denise, he fell over another boy, hurting his leg. Another time, looking around again to check that Denise wasn’t too close, he bumped into the wall, hurting the other leg. Playing to the gallery Fred had hobbled his way through the rest of school, not exactly sure which injury to favour the most. Like a WW1 veteran with his pack on his back, he limped wearily to the car, making sure he moaned the requisite amount of times. Back home he limped into the kitchen, telling his mother that he was too sore for Ms O’Se.

That didn’t happen. Ms O’Se arrived and Fred was put to work, much to his annoyance. Again he blamed his mother but Ms O’Se wasn’t having any of it. In the end the little man did his homework and even apologised for giving his mother gyp...

It’s a strange darkness that seems to fall over Fred when he doesn’t want to do something. Part of it is sheer pigheadedness, a stubborn streak that his sister also possesses. The other part though is as if his brain switches off; he doesn’t listen, won’t co-operate and would prefer to be comatose, spread-eagled on the ground or on the sofa, eyes rolled up, completely unresponsive.  No amount of arguing, cajoling, threats, dragging or in the end shouting will get him to respond. It’s really upsetting as Fred can go into this state on the slightest whim and no amount of sendings to his room seems to prevent further events.

To try counteracting this, cut it off at the pass as it were, I’ve introduced a five second rule when we see Fred sliding into this state.

I threaten with:

“I’ll count to five and if you don’t go wash your teeth you’ll spend the day in bed.”

Sounds silly now but such a situation can develop over something fairly trivial and escalate to a whole day ruined by Fred disappearing into his comatose state.

Maybe it’s Fred thinking that by mimicking his seizure status he’ll get his own way. But how does he know what that status is?

The five second rule has worked to an extent, stopping a lot of more recent fights but I feel terrible issuing the threat and worse when I have to actually follow through and frog march him upstairs. Usually half an hour in the cooler will do the trick and a repentant Fred will call me up to plead his case.

“I’m good now,” he’ll say, brown eyes looking over at me, melting any hard heartedness I’ve left in me.

It’s probably only a temporary situation borne more out of frustration at not having the freedom and control of his life that Fred sees in other kids.

We just hope it passes soon.

With more days like last Monday Fred will be well on the way to getting some sort of life back.

As will we all.

 

 

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Posted by John Verling

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