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

20Mar/140

Getting in Trouble, Again

A beautiful, sunny, spring day in Ballyard. Fred has Jaden over again and so far so good. Unfortunately it wasn’t so good last week but we’re not going to let epilepsy determine our lives anymore. At least that’s what we’re saying...there was a time, not long ago when it did rule our every movement and we don’t want to go back there.

During the week we feared we might be going backwards though. On Wednesday morning Fred had a small, almost imperceptible frontal lobe seizure about 5.30am followed by another about an hour later. These would have passed unnoticed except that I was beside him in the bed. Sometimes you wake because of the noise and it happens so quickly that you wonder if you imagined it. But in the back of your head you know you didn’t, that noise Fred makes is so unique that you can’t deny what it means. So about 6.45am or so Lisa took over and I got up to do the Dingle run with Ruby.  Before we left I went to say goodbye and Fred was fast asleep, no more episodes and Lisa had already rung the school to say he’d be staying home. Maybe, we both thought, that the cold which kept him home Monday had interfered with his meds; it wouldn’t be the first time. It might have been incubating on Saturday when he’d had the breakthrough seizure. Who knows?

Well someone who may know would be Dr Amre and so Lisa gave the Neuro Dept at Temple Street a call to ask what we should do. I feared that maybe as Fred was growing, though not putting on weight, his meds may not be working as effectively as before. Now the thing with epilepsy meds is that the slightest change in dose or ratios can completely throw them off from working properly.  Once you lose that equilibrium it can be very hard to get it back again, especially when you are growing boy like our Fred. It’s not always a case of adding an extra few milligrams; too many and the side effects can be terrible, too little and you won’t see any benefits.  Once epilepsy sees a gap it heads straight for it and closing off that gap again isn’t easy. It has taken Fred years to find the right meds and the correct dose, so any setback could be terrible. This problem also arises when dealing with generic and non-generic medicines. If the generic works it’s not certain that the non-generic will if you swop over...

With all this in mind I headed off to Dingle and didn’t hang around in getting back to Tralee. When I walked in the door Fred was sitting up on the couch eating his breakfast and watching TV....

“Hi my Dad,” he said, “I can’t go to school as I just fainted.”

There was a note of happiness in his voice...

Lisa was in the kitchen and the news was that he hadn’t had any more seizures but she was keeping an eye on him. Fred’s cold, though not as bad as Monday was still there and Lisa was preparing the miracle cure-all of hot Lemsip. The call had been made to Temple Street and a message left for Dr Amre.

When I was at my desk a bit later the call came from Dr Amre’s Registrar and she took all the info necessary. That evening Lisa got the return call saying to leave everything as it is, the cold may have had an effect and we need to keep a steady baseline when judging the VNS. Next month we have an appointment with Dr Amre and if we can hold till then all the better. We’ll just have to wait and see. So far so good and as I look out the window now three days later, I see the two friends playing in the car.

On Wednesday afternoon Fred was very sad....

“I wish I didn’t have the faints in me,” he said,” I’m sorry my Dad.”

What can you say to that, it’s not his fault but he knows how much we all hate the epilepsy. The important thing is that Fred knows it’s not his fault, just his bad luck to have the condition. We hugged for a while, me trying not to cry, Fred holding me tightly to him.

One pattern returning this week has Fred getting himself in trouble with his parents. Nothing major, just not doing what he’s told or asked. Too many times in the past he’s run off to avoid doing homework and has ended up in a heap on the ground. At times we’d leave him off but I think this week we were more stressed than usual and the last thing we wanted was to be picking him off the ground when he should be inside. Also Fred will, like all males, try to get away with doing what he doesn’t want to...

On Monday he wouldn’t do what he was told or asked and ended up in his room. A very cross Daddy sent him up and he went in a huff. A few minutes later I checked on him and he was sitting on his bed looking out the window...

“Are you sorry?”

No answer, just the stare out the window.

I headed off and just as I headed up to my office I heard the sobs. Forced ones but enough to grab my attention. Back I went and the red eyed man looked at me for a second before breaking into tears. I went over to hug him...

“I’m sorry Dad,”

“For what?”

“For being bold.”

We went back downstairs and Fred apologised to his Mum. By the time I headed back up he was settling down to his homework. The poor man gets himself in such strops sometimes and he always ends up doing what he was refusing to do earlier. By and large though I notice he wins a lot more arguments with his mother than I do. After nineteen years I’m still waiting to win my first...

On Wednesday he got himself in more trouble and Ms O’Se came around to find him banished to the Laundry room. When I came down she was coaxing him out and in fairness Fred knew he’d lost that one too. After Ms O’Se had gone Fred said he did excellent work, no mention of what had happened earlier.

Since Wednesday though he seems to have made an effort and hasn’t had any more rows with his parents. Thursday morning he got dressed, on his own, in double quick time and we were at school earlier than usual, really making an effort...

Friday morning he did the same and went off dressed in green for the early St Patrick’s Day celebrations. Afterwards the two of us went off to do the shopping, a reward for being good and Fred was eventually getting to use his writing pad bought last week. The reward was really for me; being able to relax while doing an everyday job like shopping is still a novelty. We walked around the supermarket, filling the basket and Fred ticking off the list as we went. Last on the list was the swimming togs, Fred hadn’t forgotten the visit to the Aquadome a couple of weeks back. Thankfully they don’t yet sell swimming gear at the supermarket so I was able to dodge that bullet. I don’t think Lisa and I are ready yet for that one.

On our way home in the car Fred asked...

“How did I just do at the shopping?”

“You were excellent,” I answered.

As he always is.

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Posted by John Verling

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