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

9Dec/120

They haven’t gone away, you know…

Sunday evening in Ballyard. Ruby is on the couch, texting, on her laptop and watching the X-Factor. Who said she wasn’t a multi-talented child? Her mother, looking effortlessly beautiful is lying out on the other couch and Freddie is just drifting off to sleep. The poor little wonderful man has just put down another tough week.

After nearly eight months without a serious seizure cluster one struck this week. When he’d had a good ten days seizure free I thought he might be heading into a good stretch. No such luck... On Monday he was in great form. Doing his homework, laughing and joking being just like the little boy we know he can be, if given the chance. About two o’clock I went up to my office to do some work.  As I was settling down, I heard that horrible, horrible sound of Freddie in a seizure. Even though I was two floors up, the high-pitched scream of the fright he gets, made its way up to me. By the time I got downstairs Lisa was with him, taking care if him. The little man had just been starting his lunch; he’d hardly had a bite when the epilepsy struck. A full-blown, minute and a half long seizure. Lisa gave Fred a shot of Diazepam and I tidied up around him. The two settled in on the couch and I went back upstairs to try do some work. Nothing too unusual for us, Fred had had a few days seizure free but now was back in it.

When I came down again about an hour later Freddie had just had another small five-second frontal lobe seizure. Again, nothing we weren’t used to lately. About 4 O’clock, he had another full seizure, 90 seconds long. This was something that hadn’t happened for a while, it didn’t look good. Before I went to collect Ruby at 5 O’clock Fred had another full seizure, three big ones in three hours is not good. Just after I got back with Ruby, another big one broke through. As you can only give Diazepam once every 8 hours, we were stuck. We had to go to the hospital, for the first time in seven months we would have to take Freddie in because of a seizure cluster. The disappointment was massive for the Lisa and me.

Lisa quickly threw a few things into a bag and we bundled Freddie out to the car. Last winter Lisa had a bag permanently packed and ready for the hospital. One thing I didn’t miss was seeing that in the spare room. This was also our first time since moving to Ballyard. With Lisa and Freddie in the back I drove over to KGH, Fred fairly knocked out in the back. I dropped them at the entrance to the A&E and went off to park the car. By the time I got back and into the resuss room, the doctor was working on Freddie. He’d had another seizure, another full blown one. Why was this happening again? Lisa and I could only think that maybe the levels of Tegretol had continued to slide after his appendicitis and days of being toxic. The doctor was trying to find a vein, so he could take blood and put a line in. Not an easy job with Fred’s hard to find veins. With much patience, he managed it.

With Freddie and Lisa someway comfortable, I went home to feed Ruby and get things we’d forgotten on the rush out the door, like Freddie’s glasses. On the way back over Lisa texted me to say they were heading up to the ward. Once I got there, I rushed up the stairs and into the ward. The nurses, though glad to see me, were surprised, as Freddie hadn’t come up yet. I dropped the stuff by his bed and went off to find them. After about ten minutes waiting by the lifts there was no sign of them. Down I went to the A&E and found them in the corridor. Freddie had had another seizure and they had given him Lorazepam. The drug that stops the seizures in their track but is so strong he has to get it via IV. Now he was totally zonked.

The porter wheeled him up to the ward and we settled in for the evening. Remarkably, Freddie woke up for a while but was totally spaced. I’d forgotten how Lorazepam affects him, ruins him really but at times he has to have it. Seven months without it was a great run. Now Lisa and I were fretting over why we were back in hospital, back to last winter’s situation. The last thing we wanted was to be back to going in every week, Freddie getting big doses of Lorazepam to try to stop the seizures. It must have something to do with his blood level dropping due to the interruptions of the previous week, we both thought and hoped.

About nine o’clock Lisa sent me home to look after Ruby. I kissed my little man; he tried to say good night but just couldn’t get the words out. As I walked back to the car I was really down, really upset at being back to this again. Back home I texted Lisa and the news coming back was that he was settling and falling into a deep sleep. A relief, at least the Lorazepam was working…

In the morning, I drove Ruby out to Dingle and immediately headed back to the hospital. The two had had a quiet night and Freddie was still dozing when I arrived in. The doctors had taken a blood sample to test for the levels of Tegretol and Lisa was waiting for the result. We had coffee and scones on the bed, just like so many mornings last winter. When Fred woke up he wasn’t hungry and he couldn’t talk, the usual after a shot of Lorazepam. He watched a DVD for a while but soon was back asleep. The levels came back at 41, a drop from the 56 they had been at but still a good level. The feeling was that all he had been through the previous week was affecting its effectiveness. The neurology team inCorkfelt the same but recommended we go up half a tablet more in the evenings.

Fred was too wrecked to go home Tuesday but when I came in early Wednesday morning he was sitting up, watching a DVD and hungry. He was getting back to some sort of normality. The doctor was happy for us to go home and Fred walked out as if nothing had ever happened. What a man! Back home I went back to my office to try catch up on my work, at almost the same time as I’d tried to do the same on Monday. This time there wasn’t any interruption.

Now though Lisa and I were back to watching every move of Fred’s, dreading another seizure breaking through and maybe another visit to the hospital. We wouldn’t know if the Tegretol was working again until it was tested…We didn’t have to wait too long.

Five o’clock on Friday morning a seizure broke through. Just a small one, but one that woke me, nonetheless. I don’t think I could sleep through one anyway, the slightest twitch from the man and I’m awake. Lisa gave him a shot of Diazepam and took over watch, as I was taking Ruby to school, she sent me downstairs to sleep. Not that I got much, I was worrying so much, every noise had me on alert, waiting for Lisa to call me. By the time we headed off at 7.30am Freddie was doing fine, fast asleep and no sign of a seizure.

Throughout the morning, I rang home but all was fine, he had the odd small frontal lobe seizure, but no major breakthroughs. Maybe the Tegretol was beginning to work again. Who knows?

That seems to be a major problem with epilepsy and other neurological conditions, nobody really does know. As parents, we just do what we can to make Freddie safe, give him his medicines and mind him every day.

It’s all we can do.

 

 

 

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Posted by John Verling

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