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

12May/130

A Curious Condition

Epilepsy is a curious condition. We’ve gotten to know it intimately over the years, unfortunately for Freddie a little too intimately, but still it seems like we hardly know it at all. Lisa and I have tried predicting when it may strike so as to ward off a seizure attack. Fred went through phase a few years ago of having seizures just as he woke. So we started waking him at 6am, giving him his medicine and getting him out of bed. The poor little fellow, bewildered but doing as his parents wanted, went along with our madness. For a while we thought we had it licked, then of course, the epilepsy started hitting at 5.30am, it was as if it knew we were trying to outsmart it. Then about 5pm became the attack time so we started giving him his medicines about 4pm. No such luck it moved to 3pm ish. To counteract that we started splitting medicine times to three times a day, which worked for a while but only until the epilepsy figured out what was happening. Fred has tried numerous medicines, some worked for a while before the epilepsy got around them. The diet worked well for a while but it cracked that one too. You could spend a lifetime trying to outsmart it, people have but it keeps coming back for more.

 

Recently Fred’s epilepsy has been on a 14-day rota and when it hits, it hits badly. We’ll take the 14-day turnaround if the epilepsy will keep its end of the bargain. Freddie got up to seventeen days free, down to ten days but all is better than the every three days and the constant jerking he was suffering towards the end of last year. This time I think it’s due to the addition of the Rivitrol, just before Christmas, to his dose of Tegretol. The honeymoon period that you get with the introduction of a new medicine is long over, Dr Shahwan has increased the daily intake and we’re living with the break, for as long as it lasts.

 

As we’ve been on the new seizure schedule for a couple of months now and yesterday was two weeks since the last time, the last few days were spent waiting. Lisa and I knew it was coming and even on Thursday Fred was obviously not himself. Though he did go to school and came home full of excitement about the tin whistles….

 

“Dad,” he looked up at me, eyes open, “you won’t believe it! All the kids at school had instruments.”

 

When did instruments come into his vocab and how come he can say it so perfectly but still calls his DVD player his “d player.”  Our Fred is full of surprises.

 

I gave him a big hug, one of those ones where I just don’t want to stop squeezing, we’ve waited for these moments for over four years now.

 

“Can I get a tin whistle?” the big brown eyes looking sad and pleading at defenceless me.

 

“Of course, of course…”

 

That afternoon, after Elaine came around for his two hours of home tutoring, we went out shopping. Fred has Elaine wrapped around that little finger of his. The laughing and joking coming from the front room wasn’t what I remembered education to be about. At one stage he was laughing so much, I thought a seizure would be the next thing to happen. It was great to hear him laugh so much and Elaine sounded like she was enjoying it too. Turned out they had a deal going, Elaine would write a line of sums and every time Fred got one right, he’d get a tickle.

 

It must have been a long line of sums and the boy genius must have got them all right.

 

On our trip out in the car, even though we knew it was getting close to the two-week mark, we put it out of our minds and carried on regardless, we saw the sights of Tralee. The veg shop, the butchers, the off licence,  they were all visited but the one shop that sold tin whistles didn’t have any free parking outside. So we had to come home, empty handed, the sad little man upset at not getting his instrument. When it came time to collect Ruby from school Freddie came with me, we were going to give it another shot. This time Ruby popped in, Fred and I parked illegally and waited for her. When the big sister came back with the brown paper bag, he was over the moon. Then he blew on it and the memories of how horrible a sound it can make when not playing a tune rushed back. Fred and I made a deal, he wouldn’t play with it till his teacher in school showed him how, we were both happy with this and when we got home he put it in his school bag.

 

Thursday night Fred felt sick and didn’t want his dinner. Unusual for him and a sign that something was building up in his head. He slept for a while in the early evening and woke about 9pm, somewhat better but only wanted a slice of toast. As he had slept already, the two of us didn’t go to bed till about 10.30pm and then we sat up reading stories. Its one of our favourite things but we haven’t had time to do it lately as he’s normally so tired after a day at school he drops off about 9pm. Fred even found a book we’d never read before, normally he likes the tried an trusted old favourites but the new school going man wanted a new read.

 

On Friday morning I was expecting a seizure to strike and was awake about 5am, the old boy scout in me was being prepared. Nothing happened but he wasn’t himself when he woke later. The little jerks were there, not too badly but there nonetheless. He got up about 7.15am and really wanted to go to school. I was in favour of him going but Lisa, rightly so, didn’t want to push our luck just for the sake of a couple of hours in the classroom. If something was to happen, it is best for it to happen where we’re in control, where we can keep the drama to a minimum. Ruby and I left for Dingle, the little man pleading to go to school but when I returned he was happily cuddled up to his Mum, playing Godzilla battles.

 

Friday continued as a normal day, a few rows with his Mum and a big dinner of shepherd’s pie to make up for the missed one of the night before.

 

Going to bed Friday evening was a strange event, if viewed from the outside. Lisa and I were both aware that the two weeks were up the next day and that lately the day begins badly. We discussed what we’d do and how we’d just have to go through it, or Freddie would, we’d just be there to help him. It felt a bit strange planning for a day of hell.

 

Then nothing happened, a clear day. Fred passed the fourteen-day mark.

 

So Sunday would be the day.

 

At about 4.30am this morning the seizures began. Two little frontal lobe ones, no more than five seconds each but I woke instantly. Nothing to do but call Lisa. She gave him his morning meds; maybe they’d get to work and help him through the day. Fred rolled over and cuddled back into me, sighing at having being disturbed.

 

He slept soundly for the next couple of hours till about 7.45am when he had another two, slightly longer. Lisa came down and took over and about 8.15 I went down to make breakfast. I made Fred his boiled egg too, just in case he got up. Ruby came down and had hers; I brought Lisa up a coffee. Then at exactly 9am a big seizure struck. It was inevitable, probably, but still, I hate that sound, Ruby and both knew immediately what was happening.

Now it’s nearly noon. Fred has had two more big ones and a few small ones. Lisa, the wonderful woman that she is, is sitting in the bed with him, nursing him through the day. I’m up and down the stairs but Lisa doesn’t want me fussing around, disturbing the little man. In truth there is little I can do.

 

There is little either of us can do, just sit and wait it out, mind our little boy.

 

Fred is the hero, the one who has to go through it.

 

 

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Posted by John Verling

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