Freddie is downstairs in our bedroom, sulking after fighting with his mother. My office is on the top floor and I could hear the screaming from up here. Lisa, under her blanket, reading her Kindle, had been stood on by Freddie getting up. Her long slender legs were no match for his well-fed frame and so she screamed holy blue murder but in a language usually only heard in a barrack room on payday. So the little man has taken refuge under the blanket with blue squares, as he calls our duvet, probably waiting for me to come down and tell how he’s been injured by Mom. “I don’t want her anymore, I hate her, she’s fired” are all terms he uses in this situation before making up and resuming his place next to his darling Mummy as if nothing ever happened. Usually I offer to go find a new Mum but even in his most angry of phases, he won’t agree to that….
This week has seen a slight improvement in the overall scheme of his epilepsy. When you live through it, you don’t see it all as an improvement but when reconsidered on a Sunday morning you see the chinks of light. On Monday afternoon, Lisa and Freddie were off aroundTraleeshopping, in and out of shops, picking up the essentials. Freddie wanted to go into one shop but it was busy and Lisa double parked outside and ran in. They had rowed, Freddie wanted to go but it wasn’t practical and Lisa won out. Afterwards Freddie told me the ‘fainting confusion’ started when he was in the car waiting for Mum. Fainting confusion is Fred’s term for feeling the onset of seizures, a new development and a welcome one. At least now, we have some indication that seizures are on their way, he mightn’t always get these signs but anything is better than nothing at all. Nothing happened in the car but Lisa knew when she came back out that not all was well, he looked tired and he told Mummy he was feeling confused. Lisa, taking no chances headed straight home and within minutes they were under the blanket in the front room. Tiredness overtakes him very quickly when in seizure onset mode and he was soon asleep. Lisa rang to tell me what was happening. As usual being away in Dingle feels so isolating.
To make things worse Ruby had football training that evening so it would be almost eight o’clock before we’d get home. After driving Ruby and Ali to training I went and did some shopping, getting stuff Lisa had been unable to get. In this situation I don’t call home, I reckon if Lisa needs to she’ll call me and I try to keep myself occupied, not make it more of a drama than needed. So with my jobs done and Ruby collected we headed off home, knowing that surely things must be ok. My darling daughter had been on a sleepover in Hannah’s the night before and soon fell asleep, before Annascaul even. By eight o’clock we were home and greeted at the door by Freddie, up and about as if nothing had happened. Lisa explained that all that had developed was a five-second, frontal lobe seizure; his arm lifted as if a big one was about to break through but nothing followed… All in all he’d then slept for about three hours. This was new, he’d felt it come on but only a tiny one broke through. In the kitchen, looking up at me through his glasses, Freddie explained how Mummy had left him in the car and then the ‘fainting confusion’ started. Poor Mummy never cops a break.
Monday night he wasn’t for sleeping. We went to bed about eleven but Freddie hadn’t a notion of even closing his eyes. We read a few stories, The Smartest Giant in Town, Farmer Duck, but no sign of the eyes closing. Eventually about 12.45am, he drifted off into a sleep, funnily enough quite quickly into a deep one. We’ve spent so much time observing his sleep over the last few years that we are now experts of what stage of sleep he’s at. About 1.20 he gave a loud gasp and the arm shot up, but that was all, nothing developed, another short frontal lobe seizure. The same happened about 1.45am, again I jumped up expecting the worst but nothing developed. Freddie slept the night through as if nothing had happened and when Lisa came down to wake us in the morning all was ok. That afternoon he felt tired again, no fainting confusion this time, he just needed the rest so he slept in his mothers arms for a couple of hours.
Why this is happening and if it’s significant, we don’t yet know. It’s too soon to tell and we know from experience never to second-guess epilepsy. If it’s a new pattern or not, who knows? Is the Tegretol gaining more ground and are the warning signs going to continue, thus giving us more time to fight off big seizures. Again, who knows? The only solace we can take from the early week just gone by, is that it was better than other times.
On Friday morning, Fred and I rose before the rest of the house. We were downstairs preparing breakfast, when he said he needed the bathroom, so off he went. Lisa came down and went to say hello to him but came back into the kitchen with a confused looking boy. The ‘fainting confusion’ was back he said. The two went off into the front room and settled under a blanket. Immediately he fell asleep and I went back to stop the breakfast preparations. Within a couple of minutes that horrible sound came from the front room, a seizure had broken through. Luckily he’d felt it coming on again and was in his mother’s arms. It lasted maybe a minute or so but still, it was a disappointment that one had happened. Lisa made him comfortable and gave a shot of Diazepam to stop more developing; we still don’t have the courage not to give it. As Lisa gave him the drug, it dawned on me that it was just over the week since he’d last had a shot of it. Better than every three days, as has been the norm recently. Another new development? Far, far too soon to tell or even contemplate. The developments of the early part of the week still haven’t been proven either, after all another one broke through. But then, after that seizure Friday morning he didn’t have any aftershocks. He woke for brunch, demolished a hearty meal and slept again for most of the afternoon. Obviously, the Diazepam would have been a factor here but the fact he slept so soundly for so long was another good sign.
Through all this, Freddie has been more alert than previous weeks. The improvements in concentration and memory have been enormous. His home tutor, Sine, has been coming over in the mornings and he’s responding well to the work she’s doing with him. These classes take place in “Daddy’s Office” at the top of the house and Lisa is banished back downstairs. Unfortunately, she spends the hour dreading a call from upstairs, it’s what we’re programmed to expect, but so far so good. This morning he was up with me and sat at his seat with the pen he’d borrowed from my desk. After a while he produced a line of words he’d copied and numbers too. He was so proud showing them to me but I was even prouder reading them. Freddie doing homework without prompting…
Last night as he went off to sleep in my arms I asked him what he wanted for breakfast. He listed off a long line of foods, sausages, chips, rashers, black pudding, toast and honey eggs. Honey eggs, Fred’s name for fried eggs. This morning he demolished a plate of toast, rasher and a honey egg, but not before the honey egg was sent back for being too runny…
Fred might love his food but he won’t eat just anything!