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

23Mar/140

You Never Know With Fred

It always amazes me when a seizure hits Fred in the early morning. One moment he’s sleeping like the child he is and the next he’s in a stiff ball, possessed by the tiniest quirk of his brain misfiring. The noise he makes is horrible and it chills me to the bone every time I hear it. So it was this morning. I’d had a poor night’s sleep and probably and only dropped off by about 2am. This wouldn’t be too bad if it weren’t for the fact that I’ll wake every hour afterwards to check Fred or to just move him, as he’s prone to wrapping himself around me like a heat seeking vine. It must have been around 5am that I checked him last, looking at his innocent face sleeping the night away.

We’d gone to bed later than Lisa and Ruby. Fred loves to stay up late and is allowed do so on Friday and Saturday nights. Since Christmas he’s been getting himself in trouble by beginning to talk about going to bed late from about noon onwards. He’ll throw it out there, waiting for his mother to react and then look at me for support...

“I’m not going to bed with you tonight Mum,” he’ll say, looking at me over his shoulder as he speaks.

Lisa, tired of fighting with him over bedtimes will answer...

“Really?” her head to one side, looking at Fred down her nose.

To which Fred replies...

“Yes, really Mum.”

Thankfully this only happens at weekends, Fred was pushing the bedtime row during the week for a while after getting in lazy habits over Christmas, leading to his mother putting her beautiful foot down and insisting on early bedtimes. Fred knew he’d lost by about the third week in January and things have settled since then.

As it happens we were in bed by about 10.15pm last night. We read the usual quota of three books and Fred fell asleep with his head on my chest. About an hour later and after moving him to his pillow, giving him a last swipe of his VNS with the magnet, I tried to catch that night train as well. No such luck but at least I must have gotten some sleep, as I was woken from a dream by that noise at 5.45am.

We don’t know if the VNS is working or not. There may be a pattern of the cluster not kicking in immediately, he’s only had two in total so far today, and lately the afternoon will see the main onslaught of another four or five. This could also be to do with his morning medicines protecting him too, but they are slow release so maybe not. The breakthrough seizure two weeks back was around 1pm, when the meds should be at their peak so in theory he should have been well protected.

This is also day 22 since the last cluster, but only day 15 since his last seizure. During the week he’s had some bad periods of confusion, the state that overcomes him in the lead up to a seizure attack. Each time Lisa has managed to give him a good few swipes of the magnet and after a short snooze Fred has bounced back as right as rain. The swipe of the magnet raises the amp output by one level for thirty seconds. As this will be the dose it will permanently function at after the next visit to clinic at Temple Street maybe we will see greater help from it afterwards. As everything is with Fred, he’ll push it to the limit, so it may have to be the highest setting that will be the therapeutic one for him.

Who knows?

On Tuesday Lisa, Fred and Jaden had gone to the beach to collect shells. The first trip of 2014 and Fred was really looking forward to it. No sooner than they’d arrived on Fenit beach than Fred had got a bad attack of confusion. I was upstairs when they arrived back and looked out the see Fred stretched out in the leaned back front seat. Of course I guessed the worst had happened but by the time I got downstairs Fred was being walked in by his Mum. She’d been swiping him since they’d left the beach. The poor man looked terrible but after a short snooze he was up and playing with Jaden as if nothing had happened. Jaden had been the hero on the beach, helping Lisa get Fred back in the car and packing up the bag of tools Fred had brought for the excavations. While Lisa and I were getting Fred settled on the couch, J was unpacking the car and putting everything away. As Fred slept Jaden took the opportunity for a snooze himself, the two friends having forty winks on the couch.

Even on Friday he came home early from school, only about fifteen minutes ahead of time. I knew the way Lisa was walking him that all was not ok. At school he complained of not feeling well and had got a bad dose of the jitters. Ms O’Connor wasn’t too sure of his motives but we can’t take any risks and she’d called Lisa in to take the man home. Again after some good swiping he was back to normal, sitting up waiting for Ruby to arrive home with Ali come tea time.

Maybe the signs are that the VNS is getting Fred through the bad days to an extent. Maybe in time it will give him the overall protection we all so crave but we’ll have to be patient.

One problem Lisa is tackling head on is Fred’s speech difficulties. His brain is slow to react, you ask him a question he’ll take an age to answer and of course he’ll get distracted in the meantime. What Lisa is trying to do is to get Fred out of the habit of getting distracted so easily, not to let Fred get away with not answering. We’re all guilty of letting him off and he has been letting it become a habit, not having to answer a question. Also his lack of social activity has meant he hasn’t had to be in conversation much and this has led to bad speech practice. So now we’re trying to encourage him out of his world, get him talking and answering questions when asked. Yesterday morning I had a printed list of exercises; questions and list making samples mainly. He rebelled against his mother when she brought it out after breakfast but when I got the look from Lisa that would send Putin home from Crimea, I knew it was time to get involved.

We got there in the end but it wasn’t easy. Just simple questions like ‘list three things that smell’ could take five minutes. Not that Fred didn’t know the answers but for the last few years he hasn’t had to apply himself,  so after ‘old cheese’ he’d look out the window, drift off to Godzilla land, before I’d try drag him back. Maybe if we keep on top of him Fred will get the hang of it, knowing that he can’t dodge the work but more than anything he needs the social interaction to keep the brain thinking.

Another time will tell with our Fred.

For now he’s sleeping downstairs in his mother’s arms.  The VNS is being swiped and he’s waking from time to time.

Maybe there is an afternoon of it ahead of him, who knows?

Fred is safe and for today that is all that matters in our house.

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Posted by John Verling

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