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

23Sep/120

Oh The Frustration

We’ve just had a week of frustrations, whether its just a whole load of frustrations have come at the one time or it’s just been one of those weeks where things have become more obvious I’m just not so sure, probably a bit of both.

The week began with a familiar frustration and one that continued as the week went on. After last week being fairly relaxed, seizure wise, this Monday began with a bang. Freddie rose as normal about 7am and we went downstairs to settle in for the day. As Lisa and Fred got themselves comfortable on the couch I got the breakfast ready. Ruby, after the usual pre-school preparations, came down about 7.45 and all four of us were sitting eating when Fred went over. He was eating his breakfast, apparently at ease with himself when he keeled over. A big seizure, one that we’re used to but still hate seeing him go through. This was a disappointment, as he seemed not to have had a warning, something he has been getting lately. No build-up confusion or dizziness, no extra-tired boy in the morning, just wham straight into the main event. Of course he’s had big seizures lately but they have all been preceded by some warning. This Monday morning one felt like a throwback to a few months ago. The frustration of thinking you were getting ahead but now of being thrown back again is huge. Despite the seizure, Ruby and I had to get on with the day as normal, so by eight o’clock the two of us were in the car, leaving the others behind. Lisa had given Freddie a shot of diazepam so he was fairly zonked when we said goodbye. Kissing the head of my little boy while he’s in a post seizure, drugged-up deep sleep is one thing I just hate doing. Usually when I kiss him and he’s asleep he might turn over or give a grunt of some sort but not when he’s like this. The frustration of maybe again having to face that the drugs aren’t working is huge. Also a major worry. Is he ever going to get a break? By the time I got to Dingle and dropped Ruby at school I was angry, very angry at all this. Ringing home I got Lisa’s hushed tones, as Freddie was still asleep and she didn’t want to disturb him. He eventually woke mid morning and when I called again he answered, sounding dopey but still great to hear his voice. Some little man, everything that is thrown at him but still he just gets up and carries on as if it’s all normal.

On Thursday morning we rose as normal but at the foot of the stairs Fred put his hand to his mouth and said he needed to get sick. As it was twenty minutes after he’d had his medicines, I told him not to, to try fighting it. The thing about the medicines he’s on is that you can’t give them twice but if a dose is missed it can have serious ramifications. There is a window of about fifteen minutes after giving the meds that if the patient gets sick you can safely repeat the dose. After twenty minutes you just cannot repeat the dose, the danger of overdose is too high, especially at the levels Freddie is at with his medicines. In typical Freddie style, we were just at the fifteen minute mark by that stage. Lisa took him into the front room and they laid out, see if the nausea would pass. After a couple of minutes Lisa called, Freddie was vomiting so I rushed in with a bowl. Glancing at the clock on the cooker I saw it was 7.22, just two minutes past the golden twenty-minute mark, typical Freddie. We couldn’t repeat the giving of the medicines and he would have to wing it for the day. If the body hadn’t absorbed the dose he could go into shock with more seizures, but if it had, all would be okay. Sometimes recently, nausea has been a sign that a seizure is on its way but maybe this time he had a bug, it seemed to come on him so suddenly. After settling him again, Lisa cuddled Freddie close to her and he fell asleep. No breakfast for the man. Ruby and I headed off to Dingle, leaving the two behind and for Freddie to hopefully sleep it off.

Illness can be a trigger for epilepsy, it can interfere with medications or cause high temperatures, all sorts of things can go wrong. When I called home about 11am, he’d had a seizure and Lisa was nursing a very sick little man. About midday I got a call from the school to say Ruby was sick and needed to go home too. Turned out she was more tired than anything else so I drove her home for rest. Freddie slept the whole day and didn’t eat or even wake looking for food. He had another small seizure about 4pm, a small frontal lobe one and Lisa gave him a half dose of diazepam to get him through. By the time I got home he was dopey but awake, still not hungry though, a sure sign of illness with our Fred. He got through the evening, only having a half-slice of toast about nine and was soon asleep for the night.

Friday morning I was up earlier than usual and Freddie had come downstairs with me about 7.10. As I had to be out the door by 7.30 all was a bit of a rush and I left breakfast duties to Lisa. Not that any was needed as the little man had a seizure not long after coming downstairs, probably not unexpected after the day he’d had Thursday. Again, Ruby and I were leaving Lisa and Freddie laid out on the couch. By the time I rang home at eleven o’clock he was awake and chatting to me on the phone…some man!

So the frustration of regular seizures was back with a bang.

Another frustration this week is that old chestnut of the PET scan. Still no news, still no update and the only epilepsy nurse inMunster, our only contact with CUH, is on holidays till the first week in October. No news, no nothing. This frustration is beyond description.

Freddie’s education is a major worry of ours and another large source of frustration. He finds it hard to retain things he’s learned or put what he’s learned to use. After reading something clearly in the morning, he may not even recognise the letters in the afternoon. The medicines would have a lot to do with this of course but he needs extra help just to get the stuff into his head in the first place. It takes patience and a lot of skill just to get him to absorb the smallest piece of information. There is the element of disliking all things homework based of course, maybe if the curriculum was about Godzilla or Transformers he’d be fine but I doubt it. It feels as if there is a disconnect between what he takes in and what he can recall. Thence the need to get as much as possible in and to work hard on the recall. Fred has had an SNA at school who has a great understanding of his condition and works hard at getting him up to scratch. This year however the hours allocated to Freddie are being cut, probably to only three per week. The principal at school is taking this as a personal crusade and is fighting for the maximum possible at the moment, which is only five but better than the three on offer. If Freddie could get control of his meds and seizures, he’d soon catch up at school but would need the SNA hours. The frustration of this is terrible, especially for Lisa who tries to make up the slack but finds it so difficult.

Oh the frustration.

During the week Freddie and I were in the kitchen. The kids from across the street were out playing in the evening sun, cycling around, having fun. Freddie was looking out at them, watching them having fun. Watching him watching them was hard, he can’t cycle as  we can’t take the obvious risk and the excitement of playing has been a trigger too many times in the past. At the moment we can’t risk any triggers. The frustration of seeing his childhood being curtailed is so hard to take that I try not to think about it. If Freddie had a normal life he’d be a popular kid no doubt, just like his sister.

So a week of frustrations, all of them we are too used to but we deal with them by keeping them to the back of the head, trying not to think too much about the things we can’t change.

As I write, Fred has curled up on the couch and has fallen into a deep sleep. He looks so beautiful and innocent taking his nap, looking at him just fills me with joy but also with the frustration of knowing what epilepsy has done to his little life.

Always with the frustration….

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Posted by John Verling

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