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

27Jan/130

The Raging Side Effects

Sunday afternoon and all is well. For the first time in I don’t know how long I’m writing this without any activity to report. Nothing. Not a sausage. If I believed in fate I’d probably be tempting it by writing that nothing has happened but by the law of averages and more importantly, experience, something will happen soon. For once though it’s been great to go through ten days of Fred having his life back, to some extent. Not since the induced seizures of early last Friday morning has he seen any activity.

Nobody said anything; we just carried on with our week as normally as possible. Ruby went to school, we all did what we can do in the circumstances and just didn’t think of epilepsy as much as usual. The week we had with Dr Shahwan has given us confidence, we feel like we have someone in our corner now, someone to put some manners on epilepsy. The main reason for the free time we’ve had has probably been down to the increase in the dose of Rivitrol. The Rivitrol, or its generic name of Clonazepam, was supposed to be a temporary addition, to get us through the Christmas period but he sees it as adding a bit of extra protection in the long run. The increase has been small, from .50mg to .75mg per day, but so far so good. Of course the free time we’ve had could be down to the ‘honeymoon period’ of a new drug but this has been an increase not an introduction so there’s hope.

We’re still watching him like a hawk, poor little man. That been said he was able to go to Smyth’s Toys to spend the voucher he got from Conor and Cathy. Two Ninja Turtle toy figures, it’s amazing that they are still so popular, wish I’d come up with that idea. The two have been battling all sorts of Godzillas and King Kong this week, a first for them no doubt. The money he got from Granddad Jimmy went on two action figures from the Ultraman series; they arrived in the post this week too. The excitement on his little face when tearing open the box that came from Japan was wonderful to see. On alternate nights during the week, either the Turtles or the Ultramans came with us to bed. He couldn’t go up without one or the other, searching through the blankets or behind the couch to find one before we went upstairs. There they’d be in the morning, waiting for us on the dressing table, as if they were protecting us through the night. Before going to the ‘toy store’ on Wednesday,  Freddie and Lisa drove me to college. Fred was eventually able to see ‘daddy’s school’ as he calls it, so it’s no longer a mystery when I say I’m off to school. He was impressed and wanted to come in with me, somehow he’s not so enthusiastic with his own school. He wasn’t too impressed when I had to go off early yesterday morning for an exam, have to say that neither was I.

If we could only get a long break or even a few periods of ten days free at a time it would be wonderful for us all. We could get some routine back and Fred could get out there and show the world what a wonderful man he is. For now though we’re all happy with what we have and we know that there is still a long road ahead of us. Dr Shawan said it will take him about ten days to read the outputs from last week’s tests...if my readings of him are correct it will be exactly ten days. That means hopefully we will be hearing from him this week. Lisa and I are both dreading it and looking forward to it. This will be a major part of Freddie’s fight against epilepsy and big decisions will have to be made on foot of what Dr Shahwan reports.

One of the unfortunate side effects of Freddie’s new drug is mood swings. Aggravation and irritability are how he expresses it.  He can go from being a happy little man to a violent, angry fellow on the slightest prompt. This first came to light on Tuesday. That morning I went up to my office leaving Lisa and Freddie doing homework. All seemed ok. About twenty minutes later Lisa called, asking me to come down and try sort Freddie. I assumed it was just him trying to dodge schoolwork. When I got down to the front room he had Lisa pinned to the couch and red in the face from anger. Freddie is a big strong lad but very gentle most of the time. It had all turned on a book Lisa wanted him to read. He didn’t want to read the next in the series, just the one he knew well already. Nothing too surprising there, but his reaction was terrible. Luckily he responds to me but even this time he was slow to, his anger was that bad. It’s funny that Lisa, who does everything for him, spends days in hospital with him, gets the brunt of it, while he’ll do exactly what I tell him to do. If I raise my voice a little or give ‘the angry eyes’ he’ll step in line. It wasn’t so easy on Tuesday, I had to separate the two, send Lisa out of the room and calm him down. The anger in his beautiful brown eyes was scary and upsetting. Incandescent with rage is a term I’ve never used before but it was certainly suitable here. Eventually I talked him down, he broke into tears but still wasn’t too happy with his mother. She was none too happy with him either. We hugged for a while and he gave a grudging ‘sorry’ to his Mum. It’s not in his character to behave like that, he might try shirking homework, who hasn’t, but going all cage fighter on Lisa was new. I left the two, still upset with each other and went back upstairs. About an hour later I came back down to check that the entente cordaile was still in place...the fact that I didn’t hear an MC announcing “seconds out, round 15” as I came down the stairs was a good sign.

When Fred saw me, he beckoned me over...

“Look what I just read,” he said, a beam of pride all over his little face as he showed the new level of books he’d read.

The anger had been forgotten.

“I love my Mum,” he said, giving her a big hug.

So it went during the week. If he didn’t want to do something he’d fly into a rage. Not all the time but enough to be upsetting, just another thing for us to be on the lookout for. So far he’s responded to me and its Lisa getting the brunt, not fair on his mother at all. The make ups have been lovely but the rages really upsetting.

This morning I looked up Rivitrol and its side effects. Anger and irritability are there along with a whole host of horrible rashes, hair loss etc. Nothing too unusual at this stage, sometimes Fred gets a side effect sometimes he doesn’t. When he first went on Tegretol, a drug he’s been on over a year now, he couldn’t use his legs properly but that passed too.

Our precious man gets so upset and then is even more upset with his frustration

Ironically another of the Rivitrol side-effects is bad dreams and nightmares. Freddie has always been a great man for the nightmares, some really vivid ones of being chased by sharks, his little legs going ten to the dozen in the bed. Remarkably he could remember them in detail in the morning. However since going on this dose of Rivitrol the dreams have almost disappeared, typical Freddie.

He did have one during the week...he started going “wooh ooh ooh” in his sleep and then he said “get that needle away from me, I don’t like it.” A dream about getting blood taken and a line put in during a hospital stay no doubt, poor little man..

We can only hope all this is a temporary phase cos the drug is helping him otherwise.

Now he’s down stairs, having his lunch. I haven’t been called to do my peace brokering bit yet, the sandwiches must have been to his liking.

 

 

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Posted by John Verling

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