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

11Feb/130

A Day in the Temple

Its Monday morning and we’re sitting inTemple Streetand beginning a week of tests. Yet more tests for our Fred. Already this morning he’s had a visit to the school, they have a full Dept of Education one on site, and he’s had a visit to the speech therapist. Other tests during the week will centre on his psychological wellbeing, and to find a baseline of his abilities.

 

Since I began writing this morning, we’ve had a visit from Dr Shahwan. He went through, in great detail, the outcome from the telemetry testing done on our last visit. The outlook is good but there is much testing yet to be done. In essence, he wants to confirm his diagnosis that the problems stem from the left frontal lobe and with a strong confirmation, bring that case to a surgical consult meeting. If he can do that and convince the team that surgery is a viable option, then it will happen. Obviously, that is a bit off yet but it keeps the hope up that there may be a solution for our little man. To this end he’s ordered a PET scan for Friday. The point of this is to confirm his belief that there is a metabolic disorder on Fred’s left frontal lobe. There was an inconclusive PET scan done inCorklast September but Dr Shahwan believes that with a scan dedicated to the left frontal lobe we’ll get a more conclusive diagnosis.

 

The week just gone was a return to normality for us. After seventeen clear days, clear of jerks, seizures big and small, epilepsy returned with a vengeance on Monday. After I’d made dinner and Lisa had brought it in to Fred, he keeled over. A nice big one just in case we’d forgotten what it was like. I was still in the kitchen when Lisa walked back in and said almost as a matter of fact “He’s just had a seizure there.” It had been such a long time that it wasn’t a surprise but yet it signalled for us that things were returning to normal. We both knew that they weren’t gone forever but that doesn’t mean that you don’t hope.

 

After a couple of hours he woke up, looking for dinner but was very dopey. As a matter of course, we’d given him the diazepam to stop the clustering and of course, that combined with his normal meds makes him dopey. He managed to stay awake for the rest of the evening, had the odd fight with his mother and we headed off to bed as normal. His powers of recovery always amaze me. We sat up in bed reading the “The Gruffalo” and some of his other favourites. After we finished the formal reading, Fred read his Incredible Hulk comic and I read my book.

 

Just a normal night in our little home.

 

On Tuesday morning, I took Ruby to school as normal, leaving Freddie and his Mum cuddled up in bed. When I got back, they were still in bed. He’d had another seizure. If we thought we were going to get off lightly, we were mistaken. When he woke up he was insistent on going down for breakfast, never a man to miss a meal is our Fred. As I was making breakfast, he had another seizure. It started as a small frontal lobe one but he just couldn’t fight it and a full-blown one broke through. It’s so upsetting to watch our little man being kicked left right and centre by the epilepsy, especially after the break we’d had. It knocked him for six. But he slept it off and woke looking for his breakfast. Freddie is such a strong character, he takes everything as it comes and carries on regardless. All through the day the seizures came back at him, mainly small ones but a big one broke through again in the late afternoon. Each time he woke up, shook it off and continued at what he had been doing.  When the big one broke though in the afternoon, I feared for the worst. That this might be one of those clusters that would need a trip to the hospital to stop. For the next few hours we watched him like a hawk but no more broke through. It is amazing sometimes how they just stop, other times they keep going. You live on your wits until you feel that maybe they’ve stopped. It is measured in time but not always, just because you’ve had six hours seizure free doesn’t mean one won’t happen in the next minute. Thankfully, that last one on Tuesday afternoon put an end to that particular cycle. By the time Ruby came home from school he was sitting up, happy to see his sister and looking forward to dinner.

 

This week too has seen a return to the bad temper tantrums. Anything Lisa says is met with a reaction, usually a violent one. On Wednesday evening, I was upstairs when I got a call to come try control Freddie. By the time I was down he was laying into Ruby, luckily, I was able to separate them as Ruby wouldn’t hold back. It is very disturbing to see our placid little man so unpredictable and uncontrollable. The only option open to me is to raise my voice, put on a stern face and put him in the kitchen. After a few minutes of rage and sulking, he comes around. The short sharp shock of being left in the kitchen seems to bring him to his senses. He’ll come back then full of remorse and promises of never to be bold again. He’ll cuddle up to his Mum, tell her how much he loves her and that he’s sorry for hurting her.

 

Until the next time.

 

Now Ruby intervenes and puts him in the kitchen, he won’t do it for his Mum. If Ruby told me to go to the kitchen, I’d go…Freddie does what she tells him. When we were going to bed on Wednesday evening Fred said that he didn’t like being put in the kitchen but it’s the only option we have to try control these tantrums. No doubt, we’ll be discussing them with the team here this week.

 

So, we’re here for a week. It will be tough at times, seeing what the assessing team think of our Fred and what they report back. It’s all part of Dr Shahwan’s plan for the future of Fred and that can only be for the good. Talking with him this morning was so reassuring; we feel that here is a man who’s not going to rest until he comes up with a solution. The system is against us, it’s under-funded, under-staffed, under developed but he’s not going to let that get in his way. He knows where the weaknesses are and that’s half the battle.

 

Now it’s the late afternoon. Our first day is nearly behind us. Freddie is in a complete strop and is sitting on a stool in the hallway. It’s not exactly the kitchen but it’s the only option here.

 

Actually he’s just come in, saying sorry and that he won’t do it again.

 

We’ll wait and see.

 

 

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Posted by John Verling

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