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

27May/120

Fecking Side Effects

Another week and another Sunday in Crystal Fountain. Still the weeks roll on and the house we were supposed to move into at Ballyard still isn’t ready. It looks like we’re cursed to stay in this complex, next to the fenced off source of the ‘crystal fountain’, as mentioned in The Rose of Tralee lyrics, I even saw ‘the pale moon rising over the green mountains’ last night. Poor Muttley is still in kennels, his rent is going to be more than a small mortgage by the time we leave here and I doubt if he’s even thought of us once. It could be worse but living out of boxes for three weeks is getting tiresome but hey, there’s great broadband.

Last night I was woken up by some drunks off a stag night, wandering around the estate.  Been woken at 3.34am by voices outside your window is unnerving. Funnily enough when I turned on the light they ran off but it took me a while to get back to sleep. The night before Freddie had jumped up in the bed at about the same time, shouting about the bee in his ear. He’d been in a deep, deep sleep and the bee must have been in one of his dreams. The poor little dreamer looked really scared and while cuddled up to me for the next twenty minutes or so, he kept flicking at his ear. Again, it took me a while to get back to sleep and in that time, he had another dream, this one about killing Jaws. Vivid dreams and longer than normal ones at that, seem to be one of the side effects of his condition. Nearly every morning he can recall in full a dream, or series of dreams, he’s had during the night, giving full detail of the horrors he encountered.

Side effects are a big feature in little Fred’s life.

Since day one when he went on these Anti-Epileptic Drugs, AEDs, he’s suffered one side effect or another. The most obvious one is the impact on his cognitive abilities. In order to work these drugs get into his central nervous system,  to keep his brain calm but they obviously also slow down the brain. His speech is affected; sometimes he really has to think to try getting the most obvious word out, hesitating in middle of a simple sentence, waiting for his brain to catch up. Other times he gets word placement backwards or drops them altogether. Remembering things he’s learnt can be very difficult and frustrating for him. He might learn a page of reading in the morning but have forgotten it completely by the afternoon but have it back fully the next day. This really affects his education. Funnily enough, he could tell you in detail the full plot of Jaws, 1 to 3, or the latest Spongebob but reading and retaining what he’s read is proving very difficult. The learning difficulties, the dopiness and word recall are very obvious at the moment, maybe a combination of the Frisium and the Tegretol. The weaning of the Frisium is starting this week; hopefully we’ll have a less dopey man in a month’s time.

One of the side effects of the Tegretol is on his walking. His judgement is just that bit off and he tends to plod along, possibly trying to counteract the “confusion in his brain” as he puts it. During the week, he had a fight with his mother about his walking. Lisa, so frustrated by her darling boy being so doped up, was trying to get him to walk without plodding along. When I came home from work, he called me over:

“Dad, can you talk to Mummy?” he said, looking up at me with his imploring eyes.

“About what?” I asked, smiling down at him.

“About the medicine walk, sometimes I can’t help doing the medicine walk”, he answered in his sad voice.

Another one for the Freddie list, ‘the medicine walk’, but it goes to show too how aware he’s becoming of the medicines and their side effects. Lisa and I say it, about a hundred times a day, but the sooner we get him off the medicines the better. Freddie is a wonderful, entertaining, intelligent, caring, witty, fun loving little fellow and I can’t wait for him to be able to show his charms to the world. The Tegretol too has the effect of making him very sleepy, just what he needs on top of the Frisium dopiness, often leading him to have an afternoon nap. We make light of this comparing him to an old man needing an afternoon snooze but it really impacts on his life and you could start winding his day down from about 3pm. No way for a kid to spend his childhood.  The combined affect of all four medicines is his uncontrolled jerking. His fingers will flicker all day, the hands jump, the legs jitter, some days are worse than others. If he’s sitting still, watching TV or a DVD, it can be really obvious and the fear is always that it’s the beginning of seizure activity or a sign of one to come. The afternoon can be worse than morning time but when he’s asleep they disappear altogether, the brain, at peace, stops jumping but then those vivid dreams kick in…

After 18 hospital free days, we ended back in KGH this Wednesday. On Tuesday evening he had seizure after being outside playing, not too bad a one, by the time Ruby and I came home he was sitting up eating dinner but he had that telltale doped look in his eyes. He recovered well enough and we had a peaceful night of watching both the TV and Freddie. Not before the poor man got sick all over the bedroom floor though, he just couldn’t make it to the bathroom in time. Unfortunately, this happened too early after medicine time for it to be have been absorbed but too late to give him any more, for fear of overdosing. Freddie just doesn’t get a break. The next morning I woke early, my inner warning system must have had me on alert for early seizure activity... By the time, Lisa came to take him at 7am all was fine but he was in a very deep sleep when we tried waking him. At breakfast, he said he didn’t like the toast “not the right sort of bread” and while I was telling him it was the same as always, he keeled over. A full-blown 90 second or so one, which knocked him out. Ruby and I left for Dingle, leaving Lisa with Freddie stretched out on the couch, fast asleep. By nine o’clock, he’d had two more and Lisa quickly packed the bags for the hospital trip. Some woman doing all this on her own. On the way over, he had another one in the car, just what she needed travelling on her own. Lisa rang me from the A&E saying they were settled and for me not to worry, they were in good hands. That may be true but I threw myself into work that morning in an attempt to distract myself, catching up on all those ignored jobs. All this is such a disappointment and it looked like a bad cluster was forming. Then I remembered the vomiting the night before, maybe the medicines are working to an extent but they hadn’t made it into his system just all over the bedroom floor! A tiny consolation but when you are 35 miles away anything will do. As the day progressed the threat of a cluster receded, no Lorazepam needed and a phone call from Fred about midday asking if he could go to the toyshop lifted my spirits no end. The morning dose of his drugs would have kicked in and begun doing their job. It looks like we’ll have to live with the side effects for the time being.

As soon as Ruby came in from school, we headed off.

At the hospital, the walk from the carpark, the run up the stairs, is all so familiar as is the warm welcome I get from the nurses. Freddie was sitting up in his bed, Lisa under a blanket reading her Kindle, it could have been a scene from our home life….he was happy to see me and wasn’t worried about Mummy going off to feed Ruby, no regard for the day his mother had just put down, hardly a goodbye as I walked her to the door.

The two men sat down to a plate of wedges and salads. You can’t beat the healthy hospital food on offer from the staff canteen and after the feed, we cosied up for a couple of hours of chat and reading before Lisa returned for the night shift. The ward was empty and looking back across at the two on their own, I really wished it were possible to take them both home. Fecking epilepsy. On my way down the stairs, I met Nurse Marie coming on duty. She looked really disappointed to see me, not in a bad way even though I do tease her a lot, but because it meant Fred was back, again... Marie has been with us from the start, knows the whole story. Seeing her made me happy as it meant Freddie was going to be in good, understanding hands.

The next morning I was over with them by about 7.15 with coffee and breakfast. Epilepsy might be interfering in our lives but Freddie wasn’t going to miss breakfast two mornings in a row, not if I had any say in the matter. So we sat up on his bed tucking into plates of omelette, toast and rashers, no rashers for me obviously, all washed down with mugs of fresh coffee. The look on Freddie’s face when he saw what was on offer was only wonderful. The two had had a peaceful night and would be coming home mid-morning. Life, as we know it, would be getting back to normal.

At 8 o’clock, I set off to collect Ruby. Coming out of the hospital a text came through…

“Come on Dad!” it ordered

Before I could answer it, the phone rang:

“Where are you?” my darling daughter asked

“Just leaving the hospital,” I replied

“Oh for god’s sake I’m going to be late for school”

She keeps me grounded, no matter what… don't get me started on the side effects of a teenage daughter....

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Posted by John Verling

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