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

18Aug/130

Voices in the Head

Sunday afternoon of a busy and eventful week. Every week in Fred’s life is eventful, usually now in a good way. He’s such a funny, inventive, little man that hardly a day passes without something of note happening and this last seven days hasn’t been any different. Even this morning he was getting himself in trouble by insisting on trimming the rug in the front room with my beard trimmer. We were having coffee in the kitchen when I saw him fly past the door, the trimmer badly hidden down by his side. After a couple of minutes I heard a whirring sound coming from inside. In I shot to see Freddie hurriedly slipping the trimmer under a cushion... “Ah nothing Dad,” he said. There also was a candle lined up in front of him, what he’d planned for that I’ll never know. After refusing to hand the trimmer over he was banished to his room; not for long as he apologised and was allowed back down. He’s some man for getting in trouble over the slightest thing.

On Monday Fred was still very dopey after the seizures on Saturday and that seemed to continue up to about Wednesday. Something that occurred to me this week was that maybe this was the drugs taking over again. They do their bit for the fourteen or so days and then something happens for them not to work, giving rise to that one day of seizure activity. It’s as if they lose their powers completely. Maybe if a blood-level test was done over those couple of days I’m sure it would show his dose to be way below a level of protection. As a result seizures break through and then he’s doped over the next couple of days as the drugs take hold of his brain again. Just my theory but if true and we could find out why every fourteen days his levels drop, then we’d be on a winner. I’ve read and heard of similar cases, maybe it’s how Fred metabolises the meds or maybe they just have a natural fourteen day cycle.

Who knows with our Fred?

On Monday things starting taking an odd turn. Freddie was quite deaf after the weekend, maybe we thought it was a side effect of the day of seizing or was it still the water in his ears from the previous week. That night Ruby and I were downstairs, both of us reading, when I text came from Lisa up with Freddie in bed...”please turn down the TV, its bothering Freddie.” The TV wasn’t on, neither was the radio, I checked outside, no noises there either. I went up to report. Fred was awake because of the sounds and to make things even stranger still Fred was not just hearing noises but more specifically they were from ‘Ruby’s programs.’ Fred was actually hearing specific sounds not just white noise. Taking his pillow under his arms he went up to Mummy’s room on the next floor. When I went to bed later I went up to say goodnight but now he was hearing Lilo and Stitch, a program he’d been watching earlier in the day, about twelve hours earlier. During the night he came back down with his pillow under his arm as he couldn’t sleep without me.

The poor little man.

This continued for the whole of Tuesday, different sounds but still specific ones and now it seemed to be in one ear only. We were worried, trying not to be but worried all the same. Freddie wasn’t getting any rest or peace. On Tuesday night the two of us went to bed about 10.30. He had a worried look on his face as he didn’t want to hear any more noises, they frightened him. We read a bit and he cuddled up to me as he went to sleep. I shut the window, closed all doors, turned off the sound system and my PC upstairs, anything that might give out a noise, no matter how gentle...

“I don’t want to hear those noises again,” a frightened little boy said to me as he went over to his pillow.

As I read, he dozed.

Suddenly he shot up in the bed and looked at the wall beside him.

“Ahh,” he screeched.

“What is it?” I asked.

“I heard someone call my name Dad,” he was petrified, “they were saying Freddie, Freddie.”

I sent him up to Lisa, a change of room might suit I thought. As he got out of bed he was looking at the wall, worried about what was calling him. Off he went with the pillow under his arm again, up the stairs like a bullet from a gun. Soon he was asleep though. I looked around and couldn’t see anything that would have made the noise.

On Wednesday morning he seemed much better. The noises seemed to have gone, or at least subsided and are definitely only in the one ear now. Fred came down to me in the early morning and we have a lie-in.

Lisa made an appointment for Thursday evening with an ear specialist who Fred had seen before, it s always something with the little man. As Wednesday and Thursday passed he was in far better form but still getting jip from the left ear. His two nights of wandering around the house with a pillow under his arm has him wrecked, as are his parents from worrying about him.

On Wednesday evening the two of us went for a drive around Tralee. We did some grocery shopping and all went fine. Having got the disabled drivers badge we were able to park right outside the supermarket and this gave me great strength. At least now he didn’t have far to walk and if something did happen I wouldn’t have to leave him while I got the car. These small things mean a lot, especially when on your own.

The amusements for the Rose festival were setting up in the car parks around town and when Fred saw them he was over the moon, especially when he saw the bumper cars. When we got home he told Lisa all about the ‘carnival’ and the rides he was going to go on. Unfortunately it is not possible yet for him to do the rides; a lot of it is fear on our behalf but also we have to be careful in case something does happen. Some of the rides actually carry a warning for people with epilepsy.

When explained to him he understood but it is still not fair on him.

At the ear doctor he welcomes Freddie back. Sitting in his chair he has a look into Fred’s ears. They are blocked solid with wax. The poor man, the seizure activity may have pushed it deeper into the ear canal, blocking his hearing. Where the sounds came from we have no explanation, you never know how Fred’s brain works. Maybe he was imagining the stuff he’d seen during the day and the noises were stuck in his head...who knows?

For a good twenty minutes the doctor worked on Fred’s ears. A least enough wax for two night lights came out and he sat perfectly still throughout.

Such a relief to have a simple solution.

Back in the car I called his name while sitting beside him. He nearly jumped out the window with fright, the ears were so clean his hearing was excellent.

That night he slept soundly, the first proper night for us all week.

This morning Lisa, Freddie and I went over to the Amusements. The rides weren’t suitable but we had fun walking round doing the target games. Just being out among people again, feeling safe and secure was great for us.

At the ball pool Fred won a teddy bear.

At shoot the cans he won a key ring.

Back home, with much palaver he presented the key ring to Ruby and the Teddy Bear went to Ali.

Such lucky girls.

It didn’t even occur to Fred to keep anything for himself.

Such a sweet, selfless young man.

 

 

 

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Posted by John Verling

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