The Verling Family Week My family's weekly life, dealing with everyday events and my son's epilepsy

13Apr/140

A Life More Ordinary

Two full weeks in a row for Fred at school, in fact 3 weeks but the first one was only three days long due to holidays. No coming home early due to confusion, no late starts, no days off and the poor man didn’t even get to dodge Ms O’Se in the afternoon with one of his excuses.  We are seeing something of a transition in our boy, going from permanently zonked to an ordinary eleven year old. Of course there is more to do, more catching up and we have to be constantly on our guard still but Fred’s life is improving, bit by bit.

At school now Fred doesn’t want to stay inside at his desk, nor is he content with playing gentle games of throwing the ball. During the week I was on duty for break times and I watched as Fred and Denise went striding around the playground. Striding is the only word I could use. The two did laps of the school yard Fred with his head up, confident walk and going at speed. At one stage I saw Denise almost running and I immediately thought Fred had gone down. On looking I saw it was only Fred walking so fast that Denise had to pick up the pace. They’d stop to talk to other kids, play ball and even one morning Fred was jumping hurdles laid out on the yard. My heart was jumping hurdles too, a lot bigger ones than the foot high bars Fred was negotiating. Denise was probably worse than me and she got him away from them quickly enough.

Where all this confidence is coming from we’re not sure. The VNS must be helping, making him more aware of his surroundings, that fog his head has been is finally lifting. The school too have been making big efforts to move Fred on, get him out of his comfort zone. His teachers, “the women who care for me”, as Fred puts it, are very proactive and are always encouraging him. The other kids are great with Fred, everyone seems to know his name and he gets big hellos everywhere. The overall ethos though of the school is what matters; they all pull together as a team. Nothing is too big for them and a year on since his enrolment at Blennerville Fred has only blossomed under their care. Lisa and I don’t know how to fully express our gratitude but I can say with confidence that Blennerville National School has been the making of our Fred. Lisa did bake the most sumptuous cream buns for the staff on Friday as a small gesture but we really do owe them so much.

This week they went to the Aquadome for the usual swimming lessons. It didn’t even occur to me to be worried, it was just another bus trip for Fred. At Halloween I had followed the bus from the school to the museum, waited outside and followed it back again. On Wednesday I didn’t even leave the house, mind you he couldn’t have been closer but still the level of worry is way down. Lisa was at a cookery demonstration and I was at my desk, life couldn’t be more ordinary. Although, on Thursday Denise asked me if it was ok to take Fred on the egg-hunt the next morning. They were going to the playing field, about a five minute walk away and would be hunting for a half hour or so. I agreed but Lisa was worried, which got me worried. Fred is the important one though and so Friday morning I went down to keep guard while the hunt was on. 10am I was outside the school waiting for them to leave. By 10.15 they hadn’t come out and when the school came out for the mid-morning break at half ten, I rang Lisa. She didn’t know when they were going but thought it was at 10am too, so she texted Denise. The call came back, they’d been and gone. Fred was actually out doing the hunt when we thought he was at school. He found one of the eggs as well. Jayden found two though.

 

Not that it has been all plain sailing this week. Getting Fred out of bed is still a struggle some mornings and there have been plenty of “I don’t want to get up!” moments, perfectly natural for any boy. He still manages a fight with his mother most days about something or other. This week was worse than a lot of recent weeks and Lisa thinks it may be due to seizure build-up. It is a strange phenomenon but it does seem epilepsy builds up to breaking point and we were getting close to day 17. Day 17 seems to be the tipping point these days. Before recent improvements, the build up would include a lot of confusion, dizziness and headaches but those days seem to have given way to irritability. Fighting with his mother is standard but with me he usually doesn’t too much and he certainly doesn’t dare with Ruby.

However this week the old small things, like coming in when asked or being unhappy with dinner because it isn’t what he wanted, they all made a reappearance. On Tuesday he was upstairs in Lisa’s bedroom under the duvet watching a DVD, Fred does like his comforts. At about 7.30pm I went up to ask him to come down. Fred said he wanted to go outside to which I answered no as it was too late and he was in his pyjamas. Off he ran and when I got down the front door was open. Outside there was no sign of him but when I went around the corner he was standing in the classic male pose, legs spread and peeing in the neighbours flower beds. I had to swallow a laugh but still it wasn’t good. He looked up and saw me...”fuck” was all he said, quickly trying to put everything away, followed by “oh hi my Dad.”

He was strong armed in and sent to bed. Later when Lisa went to get him all he could say was “I hate being grounded.” That boy watches too many American movies. But tough love has been the order of the day for a while now. The zero tolerance policy of coming down hard on his immature behaviour has paid dividends. Lisa, I and Ruby are intent on pushing him on, making him use his brain and not allowing Fred to get away with being too childish any more. Not that we want him to be wearing a smoking jacket and espousing the sublime beauty of Yeats’ later works. Just no more getting into pyjamas as soon as he gets home from school, no outside in the evening in his pjs, no baby talk only proper conversation, doing what he’s asked, when he’s asked and so on. Small pieces of behaviour that should make him aware of his age. No doubt it is tough for Fred but he has really made an effort, this week’s irritability aside.

The little bits of bad behaviour became too much for me as the week went on.

On Thursday evening I asked for the remote control, to which Fred shook his head. This was after maybe two or three days of constant battles over the smallest things and I just gave up, walked away as I couldn’t bear to fight with my boy again. Ruby stepped in and handed me the remote. A few minutes later Fred came up to me. I explained that getting in fights over small things was just too much, not good and I’d had enough. Fred looked me straight in the eye, mano a mano, and I feared another row... But the little man just said, “Sorry, my Dad, I won’t do it again.” What could I do? Only open my arms and have the man cuddle in for the night.

That boy.

Yesterday morning, day 20 in the current round, a seizure hit at 5.29am. Not too unexpected but horrible all the same. Fred went through it and a couple more, well spaced apart and by 11am he was down sleeping on the couch. Lisa was swiping the VNS like there was no tomorrow and he did have a comfortable day. By about 5pm he’d had six in all but he was beginning to wake, a sign that maybe the worst is over. The amount of swiping could only have helped and by 8pm Fred was awake watching a DVD. Another cluster when we didn’t have to intervene with the Diazepam. The two of us went to bed about 10.30pm and though he had a few small, frontal lobe, two second long seizures he slept well. By about 2.30 am I gave up on the swiping as it seemed to wake him and the frontal lobes only kicked in when he was dropping off. One more little twitch later and he was in a deep sleep, so deep that he woke like a new boy this morning. He even got up before me and went down to his mother, just back from her run.

Yesterday was just one day in twenty. All the other days matter so much more. Though Jaden couldn’t come over he is doing so tomorrow. Lisa and I worked around the epilepsy, did our jobs and tried to have as normal a day as possible.

Whenever I looked at Fred yesterday I thought of our visit to the bank during the week, instead of thinking of the epilepsy. At the bank Fred had sat on one of the comfy seats, reading the book he’d gotten from the library. In the queue I looked over and saw my beautiful boy sitting up straight, book in hand and looking like any other eleven year old. When he caught me looking he smiled and waved.

“How did I do?” he asked afterwards.

“Excellent,” I answered.

We walked out hand in hand, carefree, back to the car.

That’s our Fred, the boy we love.

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6Apr/140

A Full Week of School

A full week at school for Fred, the first for a while. Between holidays, seizures, bugs and colds he just hasn’t had the full five days in a row for a while. It all went smoothly, Fred didn’t complain of tiredness or boredom, nor did he feign confusion to try slip out of going. In a way he was just accepting of this is what he has to do, get on with it and keep the parents happy. At school Denise, Terry, Olivia and Rose were all full of praise for how much he has come on but all thought that March had been a bit of a wipe out. Denise said how this week had been one of his best, Rose and Olivia agreed. ‘The women that care for me’ as he calls them were all in agreement. Terry, the principal, has a more removed role but in a meeting with Lisa he was saying how changed a boy he sees from the one who started twelve months ago. Maybe now that Fred knows there isn’t any escaping the routine he’ll take it all that more seriously.

Jaden still hasn’t forgiven Fred fully for the betrayal of his friendship with TJ. Poor TJ, who Fred hasn’t mentioned since, has been kicked to the side. Though Jaden is back on good terms with Fred he still refused to sit with Fred on the bus trip to the Aquadome. Fred was very upset and told me when he came home at lunchtime that he had to sit on his own on the bus. The idea of the little man, sitting on his own, looking out the window and not understanding why Jaden was still cross, really upset me but life can be tough on us all I suppose. Yesterday Jaden came over and was still with us when I arrived home from Cobh. A very quiet Jaden but one who didn’t want to go home when Lisa called time at 8pm so all must be ok in the camp. Fred was sad that Jaden had gone but understood as it was getting late.

He didn’t understand though when Mummy said it was bedtime at 9.30pm. Reluctantly he followed her up the stairs, asking me why as he left the room. As usual I explained that his brain needs the rest, he needs to do what he was told, he’d had a great day with Jado and 9.30pm was late enough for any young man.

Within five minutes he was back down...

“I don’t love that old lady anymore,” he said, standing in front of me, pointing upstairs to where his mother was waiting. Then I heard the door of his mother’s room close so I knew the row was gone beyond repair.

“Don’t you love your mother?” I asked, “the woman who cares for you, loves you, cuddles you, minds you when you faint, is always there for you?”

“I’m sick of her,” he declared, getting in under a blanket on the couch.

After I watched my program I started to tidy up and get ready for bed. Fred sat up on the couch and asked if I would read him a bedtime story. Though I love doing so I had to say no, explaining that as he had been bold and said horrible things about Mummy he had to go straight to sleep. As I put Lisa’s wine glass out to the kitchen I heard a “sorry” come from the edge of the couch. The two of us trudged up to bed and he was asleep in my arms within minutes. All the fighting must have exhausted him

This morning when I got up Fred said he wasn’t ready yet and I went off to make breakfast, telling Fred I’d call him when it was ready. When I went up to fetch him he wasn’t in bed and he wasn’t in the bathroom. Up in his mother’s bed I found him, cuddled up to her, telling her how beautiful she is and how much he loves her.

All was forgiven.

On the way to school during the week Fred was looking out the window while I was driving. The Burt Bacharach song “What the world needs now” came on the radio, just after a Martin Luther King clip. MLK was pouring his heart into the speech and I was reciting it along with him. Burt Bacharach segued in nicely after “my eyes have seen the glory.” After a few lines of me singing about love sweet love Fred spoke...

“Dad,” he said without turning his head.

“Yes?” I asked, thinking he may ask who had been talking on the radio or who was singing the beautiful song.

“Please stop singing, it’s hurting my ears.”

After I picked myself up off the floor we drove on to school.

Fred’s new activity, initiated by him, is to go for a walk at break times. Denise, Fred and Jaden go around the school a few times, Lisa watching from the car, convinced that he’ll keel over. It’s great that Fred wanted to do something outside of the games they’ve been playing, expressing himself and not letting our fears rule his life.

Long may that last.

 

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30Mar/140

Such a Simple Day

It’s a beautiful spring day in Ballyard. Freddie got the notion this morning of rearranging his / our bedroom, “just like Ruby,” he said, through his stretched voice.  When I got back from shopping Freddie had got his Mother out from under her blanket and had moved the bed around, to under the window. Not only that but he had set himself up for the day with his DVDS and player, spread out on top of the duvet, under which he was ensconced.

His stretched voice is from the VNS putting pressure on his voice box each time it kicks in but only for a few seconds and if he happens to be talking. Small price to pay if it works. Last Sunday, though a cluster day, seven in all, wasn’t as bad as previous ones. The seizures were spread nicely throughout the day and we didn’t have to intervene with the diazepam to stop the run. For us, and of course Freddie, not using the diazepam is a major improvement. The drug is so strong it lingers in his system for days making him sluggish and sleepy. Dr Amre says it slows the brain for days afterwards and this is very obvious with Fred. So he slept well Sunday night, stayed off school Monday but was coming back to normal by Monday evening.

On Tuesday as we got ready for school he looked very contrite, standing in front of me, school shirt on, open at the collar....

“What is it?” I asked.

“I’m sorry Dad, sorry for all the fainting,” he said, head down, shaking it slightly from side to side.

“It’s not your fault,” I said, holding him to me, squeezing him so tightly I could feel the VNS under his skin.

“”Oh?” Fred said a bit quizzically, “that’s ok.”

We finished getting dressed and rushed off to school, not wanting to be late for Denise. At the classroom door Fred was hesitant about going in. The noise of the other kids talking Fred finds very disconcerting. As he can’t keep up with conversations a classroom of kids chattering just comes across as loud babble. He was looking at me, shaking his head...

“I can’t go in there Dad, it’s too noisy,” he said.

Then couple of kids passing all said “Hi Freddie” and even Jaden passed, smile on his face that his friend was back at school.

“You can,” I said, “and look everyone is happy to see you.”

“But Dad,”

Then Denise came and took his hand, Fred walked in slowly, head down and with the worries of the world on his shoulder. When I came back a few minutes later with his bottle of water, he was well settled in his desk, books out and his day begun.

That afternoon he had Ms O’Se around, no escaping for our Fred but she was happy with his work, though she commented that he was a bit tired. Whether that was put on by the man or just a natural result of Sunday combined with being back at school we’ll never know; who does when it comes to Fred?

On Wednesday morning, just after Lisa and Ruby had gone off to Dingle, Fred said he had the confusion.

“Do you really have it?” I asked.

Fred nodded, so we went inside to lie down and I gave him a few swipes of the VNS magnet.  I sat in beside him and he cuddled up. It was 8.15am and I thought I’d give him a few minutes to recover. About 8.25am I got up, saying that I had jobs to do. Fred wasn’t in a sleep by then, normally in the circumstances he drifts off quite quickly.

“With all this confusion Fred, we won’t be able to go the Waterford at the weekend,” I said. Lisa and I were planning a trip if all was ok, just a day away to give us all a change of scenery. We hadn’t yet mentioned it but I decided it may be a good time to play the trump card.

Fred shot up from under his blanket, a big, beaming smile on his face...

“Tricked you!” he exclaimed, pointing a finger at me, laughing as he spoke.

“We you pretending with the confusion?” I asked, needlessly.

“Fooled you Daddy.”

I gave him a talking to about how we needed to trust him with the confusion.  In fact I wasn’t too annoyed, remembering my own pretend sore throats and pains in my tummy from wet school day mornings. If anything I was relieved that he was keeping the epilepsy at bay.

Fred nodded as I explained and promised that he wouldn’t do it again. We got to school just as the bell went and he went off with Ms O’Se and the other kids for the midweek socializing time. This time, with just one or two other kids, initiated by Ms O’Connor, is an attempt to get Fred interacting and talking more. Little did we know the trouble it would cause....

Fred came home upset, very upset. He stood in front of me say that there was a big problem at school. Jaden wasn’t talking to him anymore. At the social class Fred had made a new friend, TJ and Jaden was very put out. Fred, in an attempt to make TJ feel welcome had spent a lot of time with him, playing and laughing. He even invited him to come to Waterford. Jaden was devastated and blanked Fred for the day. Poor Freddie, he had been told to integrate more and now that he had he’d hurt his best friend. Little Jaden must have been very put out as he is so very caring of our Fred. I tried to explain that it would probably be ok, that Jaden would have forgotten all about by the next morning.

Thankfully he had and Fred came home in great form. They had made a Mother’s Day card at school which he had behind his back. He presented it to Lisa and they had a big hug in the kitchen, followed by some great lines...

“You are so beautiful my Mummy, I love you so much.”

“You are so pretty and so good at caring for me, I love you my Mummy.”

Fred knows how to use his words, how to break his mother’s heart. The hugging went on for ages, along with a lot of cracking, heart breaking one-liners.

Oh that boy.

All week the talk was of Waterford. Denise said it was all he talked about, as did Ms O’Se. Once Fred gets something in his head it can be very difficult to get him thinking of anything else. Denise was said to be very cross that he wasn’t concentrating on his reading, just thinking of Waterford...

Eventually Saturday morning arrived, the countdown was over.

All went so smoothly that it was difficult to remember that just a year ago we wouldn’t have dreamed of doing such a trip. Lisa and Fred had the back to themselves, Ruby and I the front. After a while Fred was driving his mother “distracted” with asking where we were, what town was next and are we almost at Waterford? A bit of a change from ‘are we there yet?’ For awhile he was asking who lived in each town named to which the answer ‘nobody we know’ was wearing a bit thin. A coffee stop in Midleton broke the tension.

At Uncle Bill’s we were welcomed with open arms, Fred going off with his cousin Lucy to watch movies and I could hear plenty of chat coming from the front room. Fred was making an effort and wasn’t calling on us for help. Even when I told him it was time to go he wasn’t happy and it was only that we were going to see Aunty Claire could I get him away from Lucy.

At Aunty Claire’s Fred ran in from the car and nearly knocked Claire off her feet. For a good five minutes they hugged, Freddie not letting her go. We stayed in the car watching, the plan was to go for lunch in Dungarven and Fred was only fetching Aunty Claire. In the car Fred was beside himself, sitting next to Claire in the back, beautiful Mummy forgotten. At the restaurant Fred had to sit in with Claire and they both had the same lunch. Poor Aunty Claire even had to accompany him to the bathroom, for all the pleasure that entailed. By the time it got to five o’clock it seemed such a shame to have to break up the party. But it was the end of a great day. A simple family day out but when these go so well for us it is a major achievement. Fred said his goodbyes to Aunty Claire we headed for the West.

In the car Fred cuddled up to his Mummy once more. He hadn’t forgotten her completely and he slept laying up against her, under his blanket, the sleep of a contented man.

Last night as the two of us were about to go to sleep I asked what was his favourite part of the day. Without hesitation Fred answered...

“The restaurant, it was delicious and Aunty Claire was there.”

With that he rolled over and into a deep sleep.

A perfect end to a perfect day.

 

 

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23Mar/140

You Never Know With Fred

It always amazes me when a seizure hits Fred in the early morning. One moment he’s sleeping like the child he is and the next he’s in a stiff ball, possessed by the tiniest quirk of his brain misfiring. The noise he makes is horrible and it chills me to the bone every time I hear it. So it was this morning. I’d had a poor night’s sleep and probably and only dropped off by about 2am. This wouldn’t be too bad if it weren’t for the fact that I’ll wake every hour afterwards to check Fred or to just move him, as he’s prone to wrapping himself around me like a heat seeking vine. It must have been around 5am that I checked him last, looking at his innocent face sleeping the night away.

We’d gone to bed later than Lisa and Ruby. Fred loves to stay up late and is allowed do so on Friday and Saturday nights. Since Christmas he’s been getting himself in trouble by beginning to talk about going to bed late from about noon onwards. He’ll throw it out there, waiting for his mother to react and then look at me for support...

“I’m not going to bed with you tonight Mum,” he’ll say, looking at me over his shoulder as he speaks.

Lisa, tired of fighting with him over bedtimes will answer...

“Really?” her head to one side, looking at Fred down her nose.

To which Fred replies...

“Yes, really Mum.”

Thankfully this only happens at weekends, Fred was pushing the bedtime row during the week for a while after getting in lazy habits over Christmas, leading to his mother putting her beautiful foot down and insisting on early bedtimes. Fred knew he’d lost by about the third week in January and things have settled since then.

As it happens we were in bed by about 10.15pm last night. We read the usual quota of three books and Fred fell asleep with his head on my chest. About an hour later and after moving him to his pillow, giving him a last swipe of his VNS with the magnet, I tried to catch that night train as well. No such luck but at least I must have gotten some sleep, as I was woken from a dream by that noise at 5.45am.

We don’t know if the VNS is working or not. There may be a pattern of the cluster not kicking in immediately, he’s only had two in total so far today, and lately the afternoon will see the main onslaught of another four or five. This could also be to do with his morning medicines protecting him too, but they are slow release so maybe not. The breakthrough seizure two weeks back was around 1pm, when the meds should be at their peak so in theory he should have been well protected.

This is also day 22 since the last cluster, but only day 15 since his last seizure. During the week he’s had some bad periods of confusion, the state that overcomes him in the lead up to a seizure attack. Each time Lisa has managed to give him a good few swipes of the magnet and after a short snooze Fred has bounced back as right as rain. The swipe of the magnet raises the amp output by one level for thirty seconds. As this will be the dose it will permanently function at after the next visit to clinic at Temple Street maybe we will see greater help from it afterwards. As everything is with Fred, he’ll push it to the limit, so it may have to be the highest setting that will be the therapeutic one for him.

Who knows?

On Tuesday Lisa, Fred and Jaden had gone to the beach to collect shells. The first trip of 2014 and Fred was really looking forward to it. No sooner than they’d arrived on Fenit beach than Fred had got a bad attack of confusion. I was upstairs when they arrived back and looked out the see Fred stretched out in the leaned back front seat. Of course I guessed the worst had happened but by the time I got downstairs Fred was being walked in by his Mum. She’d been swiping him since they’d left the beach. The poor man looked terrible but after a short snooze he was up and playing with Jaden as if nothing had happened. Jaden had been the hero on the beach, helping Lisa get Fred back in the car and packing up the bag of tools Fred had brought for the excavations. While Lisa and I were getting Fred settled on the couch, J was unpacking the car and putting everything away. As Fred slept Jaden took the opportunity for a snooze himself, the two friends having forty winks on the couch.

Even on Friday he came home early from school, only about fifteen minutes ahead of time. I knew the way Lisa was walking him that all was not ok. At school he complained of not feeling well and had got a bad dose of the jitters. Ms O’Connor wasn’t too sure of his motives but we can’t take any risks and she’d called Lisa in to take the man home. Again after some good swiping he was back to normal, sitting up waiting for Ruby to arrive home with Ali come tea time.

Maybe the signs are that the VNS is getting Fred through the bad days to an extent. Maybe in time it will give him the overall protection we all so crave but we’ll have to be patient.

One problem Lisa is tackling head on is Fred’s speech difficulties. His brain is slow to react, you ask him a question he’ll take an age to answer and of course he’ll get distracted in the meantime. What Lisa is trying to do is to get Fred out of the habit of getting distracted so easily, not to let Fred get away with not answering. We’re all guilty of letting him off and he has been letting it become a habit, not having to answer a question. Also his lack of social activity has meant he hasn’t had to be in conversation much and this has led to bad speech practice. So now we’re trying to encourage him out of his world, get him talking and answering questions when asked. Yesterday morning I had a printed list of exercises; questions and list making samples mainly. He rebelled against his mother when she brought it out after breakfast but when I got the look from Lisa that would send Putin home from Crimea, I knew it was time to get involved.

We got there in the end but it wasn’t easy. Just simple questions like ‘list three things that smell’ could take five minutes. Not that Fred didn’t know the answers but for the last few years he hasn’t had to apply himself,  so after ‘old cheese’ he’d look out the window, drift off to Godzilla land, before I’d try drag him back. Maybe if we keep on top of him Fred will get the hang of it, knowing that he can’t dodge the work but more than anything he needs the social interaction to keep the brain thinking.

Another time will tell with our Fred.

For now he’s sleeping downstairs in his mother’s arms.  The VNS is being swiped and he’s waking from time to time.

Maybe there is an afternoon of it ahead of him, who knows?

Fred is safe and for today that is all that matters in our house.

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20Mar/140

Getting in Trouble, Again

A beautiful, sunny, spring day in Ballyard. Fred has Jaden over again and so far so good. Unfortunately it wasn’t so good last week but we’re not going to let epilepsy determine our lives anymore. At least that’s what we’re saying...there was a time, not long ago when it did rule our every movement and we don’t want to go back there.

During the week we feared we might be going backwards though. On Wednesday morning Fred had a small, almost imperceptible frontal lobe seizure about 5.30am followed by another about an hour later. These would have passed unnoticed except that I was beside him in the bed. Sometimes you wake because of the noise and it happens so quickly that you wonder if you imagined it. But in the back of your head you know you didn’t, that noise Fred makes is so unique that you can’t deny what it means. So about 6.45am or so Lisa took over and I got up to do the Dingle run with Ruby.  Before we left I went to say goodbye and Fred was fast asleep, no more episodes and Lisa had already rung the school to say he’d be staying home. Maybe, we both thought, that the cold which kept him home Monday had interfered with his meds; it wouldn’t be the first time. It might have been incubating on Saturday when he’d had the breakthrough seizure. Who knows?

Well someone who may know would be Dr Amre and so Lisa gave the Neuro Dept at Temple Street a call to ask what we should do. I feared that maybe as Fred was growing, though not putting on weight, his meds may not be working as effectively as before. Now the thing with epilepsy meds is that the slightest change in dose or ratios can completely throw them off from working properly.  Once you lose that equilibrium it can be very hard to get it back again, especially when you are growing boy like our Fred. It’s not always a case of adding an extra few milligrams; too many and the side effects can be terrible, too little and you won’t see any benefits.  Once epilepsy sees a gap it heads straight for it and closing off that gap again isn’t easy. It has taken Fred years to find the right meds and the correct dose, so any setback could be terrible. This problem also arises when dealing with generic and non-generic medicines. If the generic works it’s not certain that the non-generic will if you swop over...

With all this in mind I headed off to Dingle and didn’t hang around in getting back to Tralee. When I walked in the door Fred was sitting up on the couch eating his breakfast and watching TV....

“Hi my Dad,” he said, “I can’t go to school as I just fainted.”

There was a note of happiness in his voice...

Lisa was in the kitchen and the news was that he hadn’t had any more seizures but she was keeping an eye on him. Fred’s cold, though not as bad as Monday was still there and Lisa was preparing the miracle cure-all of hot Lemsip. The call had been made to Temple Street and a message left for Dr Amre.

When I was at my desk a bit later the call came from Dr Amre’s Registrar and she took all the info necessary. That evening Lisa got the return call saying to leave everything as it is, the cold may have had an effect and we need to keep a steady baseline when judging the VNS. Next month we have an appointment with Dr Amre and if we can hold till then all the better. We’ll just have to wait and see. So far so good and as I look out the window now three days later, I see the two friends playing in the car.

On Wednesday afternoon Fred was very sad....

“I wish I didn’t have the faints in me,” he said,” I’m sorry my Dad.”

What can you say to that, it’s not his fault but he knows how much we all hate the epilepsy. The important thing is that Fred knows it’s not his fault, just his bad luck to have the condition. We hugged for a while, me trying not to cry, Fred holding me tightly to him.

One pattern returning this week has Fred getting himself in trouble with his parents. Nothing major, just not doing what he’s told or asked. Too many times in the past he’s run off to avoid doing homework and has ended up in a heap on the ground. At times we’d leave him off but I think this week we were more stressed than usual and the last thing we wanted was to be picking him off the ground when he should be inside. Also Fred will, like all males, try to get away with doing what he doesn’t want to...

On Monday he wouldn’t do what he was told or asked and ended up in his room. A very cross Daddy sent him up and he went in a huff. A few minutes later I checked on him and he was sitting on his bed looking out the window...

“Are you sorry?”

No answer, just the stare out the window.

I headed off and just as I headed up to my office I heard the sobs. Forced ones but enough to grab my attention. Back I went and the red eyed man looked at me for a second before breaking into tears. I went over to hug him...

“I’m sorry Dad,”

“For what?”

“For being bold.”

We went back downstairs and Fred apologised to his Mum. By the time I headed back up he was settling down to his homework. The poor man gets himself in such strops sometimes and he always ends up doing what he was refusing to do earlier. By and large though I notice he wins a lot more arguments with his mother than I do. After nineteen years I’m still waiting to win my first...

On Wednesday he got himself in more trouble and Ms O’Se came around to find him banished to the Laundry room. When I came down she was coaxing him out and in fairness Fred knew he’d lost that one too. After Ms O’Se had gone Fred said he did excellent work, no mention of what had happened earlier.

Since Wednesday though he seems to have made an effort and hasn’t had any more rows with his parents. Thursday morning he got dressed, on his own, in double quick time and we were at school earlier than usual, really making an effort...

Friday morning he did the same and went off dressed in green for the early St Patrick’s Day celebrations. Afterwards the two of us went off to do the shopping, a reward for being good and Fred was eventually getting to use his writing pad bought last week. The reward was really for me; being able to relax while doing an everyday job like shopping is still a novelty. We walked around the supermarket, filling the basket and Fred ticking off the list as we went. Last on the list was the swimming togs, Fred hadn’t forgotten the visit to the Aquadome a couple of weeks back. Thankfully they don’t yet sell swimming gear at the supermarket so I was able to dodge that bullet. I don’t think Lisa and I are ready yet for that one.

On our way home in the car Fred asked...

“How did I just do at the shopping?”

“You were excellent,” I answered.

As he always is.

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9Mar/140

Fred and Hugh

On Monday Fred just did not want to go to school. Sunday evening the excuses began and they were still going Monday morning at breakfast time...

“But Dad, I can’t go to school, I had the fainting,” a reference to his bad day at the museum on the Friday.

Followed by a line such as “I can’t go back to that place it’s too noisy.”

The noise is a recurring problem for Fred, as it is for a lot of people with epilepsy. Background sounds become amplified or meld into just white noise and it can be very difficult for Fred to tune in. Also with Fred having difficulty in keeping up with conversation, he really needs to concentrate and is only good at one on one chat. This was a point highlighted at a meeting we had in Dublin Friday morning. As Fred needs to think between each word, dragging the words together from the back of his brain, group conversation is next to impossible.

As the two of us got ready for school Fred was yawning and insisting that he was too tired. My usual comeback is that if he doesn’t go there won’t be anymore trips to the museum, no more fun at school and the trump card, no more Jaden. In Fred’s mind there would be nothing worse than not seeing the J man again so he reluctantly agreed to go.

After school Fred was very tired, nothing too unusual there for any man or boy on a Monday. He told me that Denise was cross with him for not knowing his words. Somehow I doubt if Denise was cross but she was probably trying to overcome a big problem in Fred’s reading skills. Fred he is very visual. His reading can be good when the text is accompanied by illustrations, another point that was raised at Friday’s meeting. What Denise had been upset at, as we all get at times, is when Fred can read the words in his book but not when they are on his separated word cards. The fact that his concentration levels are fairly poor doesn’t help either. At times Fred will prefer to look out the window or what someone else is doing rather than the matter at hand. Doesn’t help when you are trying to teach him and Fred is lucky to have a patient teacher like Denise.

Then on Tuesday he came home bright as a button. Denise had been very pleased, he said. When Ms O’Se came round for the afternoon hour she reported that Fred did great work and she was delighted with him. What a difference a day makes and Fred was lapping up the praise, delighted to make all the women happy.

Wednesday morning and there was another school trip planned. This time to the Aquadome, just next to our home here. Unfortunately, the one activity that is too dangerous for our Fred is swimming. With his epilepsy so unpredictable, though it has been good lately, the risk would be too high of something going wrong. Fred was not happy with not going swimming. The bus trip was on but actually going into pool was not allowed. Fred would sit with Denise and Rose in the café, watching the kids and playing games. Lisa was worried about the whole venture, after the trip to the museum on Friday going wrong, but as Rose assured her, he’d be well marshalled and would have a good time.

Fred did have a good time, though unhappy with not getting into the pool. He told Rose that next time he’d be bringing his swimming gear. We’ll see on that one. But at least he had another incident free school outing though Lisa, sitting at home, was none the better for it. Each time the phone would beep Lisa would jump, a call would put her off the deep end. Eventually after the two hours of torture she could take no more and shot off to be outside the school for when they came back, just in case. Though I was laughing, teasing her by saying I could see Coast Guard helicopters outside, I fully understood why she was so worried. It’s not easy being Freddie’s parents.

Fred was full of it when he came back….

“I have to go in that pool Dad,” he said, looking up through his brown eyes, “I need the exercise. I need to build my muscles Dad.”

This from a man who would have no problem asking his mother to get him a glass of water from the kitchen, even if she was sitting next to him. The poor fellow, he used to love his trips to the beach. I still remember holding him in the sea, letting him float on the gentle waves of Beenbawn, holding tight to his wet and wriggling little body. If he could he would have taken off after Ruby into the big waves, the sea held no fear for him. The laughter still rings in my ears from when he’d catch a small wave with his body board and wash up in the sand. Hopefully, those days will come back to us; I know Fred would love them.

On Friday we had another appointment at Temple Street, two in fact. The first was Fred’s next jump in the VNS settings. The double jump the last time was a bit too much, so this time Suzanne would only do the single bump. After the meeting with Suzanne we’d have the second of the sessions with the educational psychiatrists. Before all that though, we’d have a night with Conor and Cathy. The highlight of any week for Fred.

This time Ruby came with us so it was a real Verling family road trip, complete with rows before we even go out the door. Ruby was allowed stay home, saving us a trip to Dingle but Fred had to go to school. He was far from happy with this but at least he was coming home early, 12.30pm, so we could get on the road. I picked him up from school and he gave Denise a big goodbye, she telling him to have a good time with Conor and Cathy. Fred of course had filled her in on the trip, probably since he’d began counting down the days on Monday.

In Dublin Fred had a ball, as we all did. The make the trip even more special we had a Chinese for dinner and I think it was the only time Fred was quiet all evening, munching away at his vegetable noodle dish. It’s one of his favourite things, piling the food onto the prawn crackers or the white crisps as he calls them. That night we all slept soundly. Fred cuddled up to me and slept like a babe, the Chinese doing its job. No wandering around the house looking for a comfortable bed, not sure if he’d be better off with his mother or his Dad. The fact Ruby was cuddled up to he mother probably put him right on that one, she wouldn’t be too happy with being disturbed.

On Friday morning we headed over to Temple Street. Lisa and I were expecting a long session with the psychiatrist but we were out by 10.30am. The bump up with Suzanne had only taken five minutes, so we even had time for breakfast before the second meeting. The meeting went well. Though they could see that Fred had concentration problems they believed it’s linked to his epilepsy rather than any attention deficit syndrome. Though we also believed that, it was great to have it confirmed. The last thing Fred needed was to have another condition to deal with. We discussed the findings of the school report and highlighted Fred’s need for more social interaction. The points we were aware of before, speech problems, concentration problems, slowness in retrieving stored knowledge, it was all there. It will be hard work getting to overcome these difficulties but we will, Fred will get there.

After Temple Street, the ladies went shopping. Ruby had a party on Saturday night and she needed a top, plus half a dozen extras too. Fred and I dropped them by the Jervis Street Centre and went off on a drive.

As we drove up around Parnell Square I noticed the HughLaneGallery….

“Would you like to see some paintings?” I asked.

“Sure,” he said.

“Let’s go to the art gallery so,” I said, parking up in the disabled parking spot right outside the door. I hadn’t even checked if it was open, it was only 10.45am, but thankfully it had been since 10am.

The HughLaneGallery is in a beautiful old building in the centre of Parnell Square. In it’s time it must have been one of the finest buildings in Dublin, overlooking O’Connell Street below it. The gallery houses some of the finest Irish art with some wonderful pieces by Monet, Rodin, Pissaro and others.

“Wow,” Fred said when we walked into the reception area, “it’s so beautiful.”

We laughed at the Rodin bronze sculpture of the naked man near the entrance. In the galleries we wondered at some of the large canvases and Fred loved it...

“Can we see more?” he’d ask as we’d finish one room and move onto another.

In the Francis Bacon section, his studio in London, donated by Bacon to the Hugh Lane, has been carefully transplanted. Fred loved looking through the glass panels at where Bacon worked. We both agreed that Mummy wouldn’t be happy with the mess.

Downstairs Fred wanted to go in the bookshop and look around. He was fascinated by the fancy writing pads, at €12.50 very fancy, and every time we passed by he wanted to go in and look at them. When Lisa and Ruby joined us he brought them in to see the writing pads. After a coffee and lemonade in the cafe we hit the road to Tralee. In all Fred and I had spent over two hours in the Hugh Lane and we both loved it.

An uneventful trip home finished with Fred reminding me that I’d promised to buy him a writing pad when we got back. The two of us set off, leaving the ladies to settle back home. In the stationery shop we found just the right pad and some good markers, all for €4.50. Fred loved them and has been practising his words all weekend.

Yesterday though he had a seizure in the car. Only 8 days since his last one. Lisa was dropping Ruby and Ali to the bus when the confusion came on him and he couldn’t fight it. Jaden was there too and he helped Lisa get Fred comfortable. Poor Fred, so soon after the last one and just when Jaden had come over.

Thankfully though it didn’t develop into a cluster and Fred slept it off, waking in time for dinner. I asked him what happened and he said he had the bumping confusion that he couldn’t stop. What this is we’re not sure but I think he meant a strong build-up that happened so quickly it hit with little warning. Today he has a cold, maybe that added to the problem, we just don’t know. The only thing we can do is wait and see, hopefully the eight day break was just a freak event. The fact a cluster didn’t develop must be a good sign.

Fred slept well last night and is downstairs watching a movie.

It’s almost like yesterday’s seizure never happened.

Somehow I think he’ll remember it when it’s time for school in the morning.

Fred wouldn’t be Fred otherwise.

 

 

 

 

 

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2Mar/140

Fred’s Nightmare at the Museum

Last week Fred had a nightmare about the museum. When he woke up in the morning I was told all about it. The big dinosaur and the pterodactyl had chased Fred through the building, trying to catch him.  Fred described in detail the big teeth of the T-Rex and the wings of the pterodactyl has they tried to track him down for dinner. I asked Fred which museum all this had happened in and he answered...

“The big one in town, where I went with Jaden and Denise,” his eyes wide open and the fear still written across his face. In his dreams he’d created a mash-up between his favourite movie, “Night at the Museum”, and a favourite school trip of last year. Some imagination at work in our Fred’s head.

So this week ,when back from the mid-term break, we got a note home saying they were planning another trip, this time to see the exhibit on medieval life, it seemed very appropriate. Denise explained to me that they would be going over on the bus and spending about an hour digging for bones. Heaven for our Fred, a trip on the bus and an archaeological dig, he couldn’t be happier.

All the talk was of the bus.

“What day is it today?” he’d ask.

“Tuesday.”

“Four more days and we’ll go on the bus,” half a question and half a statement of fact but the excitement was building.

Before the excursion Fred had to get through the week at school. On Monday he was a very sleepy boy, not wanting to get out of bed and not waking fully till at the breakfast table.  Even when getting ready for school he was rubbing his eyes and complaining of being tired...

“I’m too tired for school, my Dad,” he said, struggling to button his shirt, yawning and trying to snuggle into me for a snooze.

We eventually got out the door and Fred was happy to see Denise and Jaden at the classroom door.  As it was getting into the red zone with seizure free days I was a little concerned but Denise and Rose are well capable of reading the warning signs. I said it to Denise that he might be a bit tired and she said...

“We’re all tired this morning Freddie, I could barely get out of the bed myself.”

There was something reassuring about the way she said it that made me knew Fred was in good hands, that he was being well looked after.

He came home lunchtime full of talk about the museum and the tone was set for the week.

Swiping his VNS with the magnet started again this week as well. The effect of the double jump had been too much and under advice we left it alone for two weeks. We were worried that the renewed swiping might knock him but he didn’t seem to mind the extra jolt. The only side effect was the strained Marlon Brando for a few minutes afterwards but nothing else.  Every twenty minutes or so either Lisa or I will find the VNS under his skin and swipe the magnet over it in an X shape. The little black magnet has become part of the furniture now, wherever Fred is you’ll see it somewhere nearby. Even when he’s asleep he gets a swipe, no escaping the swiping in this house.

On Tuesday Fred came home saying he wanted to quit school, he’d had enough of Denise and her rules. Apparently he’d wanted to go home and Denise had told him he had to stay. They’d been playing ball in the yard and Fred got a ball in the stomach. Now I’ve seen these balls, they are soft and with some air left out, so they can’t hurt anyone or break a window. The effect of one in the stomach can’t have been bad but Mr Dramatic saw it as an excuse to slip off home. Thankfully Denise is up to his ways and put her foot down...

“But Dad,” he said to me, palms out flat, imploring me, “I’m sick of that school and those rules.”

“Well if you don’t go to school you won’t see Jaden or get to go to the museum on Friday.”

“Oh, all right but I’m sick of their rules,” was the resigned reply.

Not a man for rules is our Fred.

Each day this week he’s had Ms O’Se over for the afternoon session so there hasn’t been any escape from the homework. On Wednesday Fred pulled the headache card but Lisa and Ms O’Se were having none of it. Fred took a couple of painkillers and Ms O’Se got stuck into the homework. As I left the kitchen I saw Fred settling down to the work, Ms O’Se wasting no time. Fred knows when the game is up and taking on the might of his mother and Ms O’Se just wasn’t a battle worth fighting.

Friday morning was the day of the big trip. Fred was excited about the bus and said he was going to sit with Jaden. In the playground Denise met us and Fred gave her a big smile...

“Good morning Denise,” he said very politely, “When are we going on the bus?”

She laughed, “Oh Freddie, not until twelve o’clock. We have school work first.”

No escaping the schoolwork for our man.

At midday Lisa drove down to the school and watched them all file onto the bus, Fred walking out with Jaden. She followed the blue bus across town and took up watch outside the museum door. Fred filed off and walked up the steps of the museum with Denise on guard beside him. In they went and Lisa settled in for the duration.

Then her phone rang.

Fred had made it in the doors but collapsed on the hard marble floors. Lisa was in like a shot and Fred was just coming through the seizure. Rose and Denise were with him. He’d crashed off Denise and slid down, giving his head an awful wallop. The lump on the side of his head when he got back home was the size of a tennis ball. The three managed to get him up and with the help of the museum attendant got Fred into the back of the car.

Fred had made it to the museum, the aim of his week but not beyond the lobby doors. That afternoon when Ruby came home he told her he’d been on the bus and gone to the museum but he’d fainted inside.

It was day twenty seizure free, a slight improvement on the last break and illness aside, he’d had a clear run of it. The day itself went fine, under the circumstances. Lisa took charge and she nursed our boy through the worst of the cluster. In all Fred had seven seizures, Lisa had given him a shot of diazepam after the sixth and as always,  epilepsy had one last shot before he went to sleep. Just before he got into bed it threw Fred to the floor, Lisa as always there to catch him. That besides, he had a very peaceful night and stuck to me like a limpet, even getting in a few dreams, judging by the running legs.

In the morning when he woke up Fred looked up at me through his battle weary eyes...

“Dad?”

“Yes, my man.”

“I’m sorry I fainted at the museum, I couldn’t help it.”

Just now I heard him coming up the stairs. I’d left Fred and his Mum in peace downstairs an hour ago. There was a knock on the door and Fred came in, looking sorrowful through his sellotaped glasses. They too had gotten a bashing off the museum floor.

“Me and Mum were fighting.”

All is back to normal in the house.

The cycle begins again.

 

 

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23Feb/140

The Best of Friends

On Monday Fred went back to school, between seizures and sickness he had been off for a full week. That’s a long time for a little man who needs all the education and interaction he can get. So on Sunday when his appetite returned it was all systems go for Monday morning. Not that he was happy about it but the news that he had only three days until the mid-term break softened the blow. On the other side Ruby was off for the full week, which only added to Fred’s sense of being the victim. The week that he’d just put down really was a lost week; constantly tired, sleeping, and feeling dopey, it  was like going back to the bad days for us. When he woke up Sunday hungry and then during the day looking to do things other than sitting on the couch, we were very relieved. If asked, Fred would probably agree, under pressure, that going back to school was for the better.

Usually now I drop him at the gate but as he’d been off, the two of us went into the school together. Everyone was happy to see the man and the welcome reminded me of how great Blennerville is for Fred. As usual Fred pretended to be shy and held back by the front door, just next to the coat hooks. Denise came out with a big hello as did Muinteoir Rose, and Fred smiled his best ‘please don’t be too hard on me’ smile which, along with his worried face gets them every time. Behind Fred though was Jaden, a big smile on his face too and when Fred turned to see him he looked like the happiest boy in Ireland. The two walked into the classroom together, Fred not even saying goodbye, which delighted me, he needs that independence another friend gives him.

At lunchtime Rose suggested to Lisa that Fred could do with more social activity. They both agreed he’d stay until 1.30pm, a time when the class tends to be more social and it would also make Fred feel part of the whole set-up. The sooner he’s looked upon as part of the class from start to finish the better, not some figure that comes and goes like an outsider. It’s only an extra half hour and the idea is to push it up to 2pm from next week. Fred will become a fulltime student once again. Also we’re going to get him to school early so as he’ll be part of the hustle and bustle of the morning activities. As it is we’ve being getting him in just as class begins and then he heads off for an hour with his resource teacher Olivia. From now on he’ll get to settle with friends before heading off and that can only benefit him. Fred also will take Jaden and another friend with him to resource teaching, to play board games once or twice a week. This will help him make new friends and increase his social activities. It’s all go for the man.

On Tuesday Fred was up and at ‘em early. He hardly had a chance to sit still after breakfast before we had him on the road. The extra few minutes will be great for him. When he came home about 1.40pm I asked Lisa how he had been with the jump. Fred didn’t even notice and of course he loved the extra time spent with friends. We know that he can only benefit from all this and when he goes to 2pm next week, the first part of his reintegration will be complete. Such a difference from last year when the thought of school terrified us.

When he came in the door I asked Fred how he got on...

“Oh fine,” he answered, “but there’s good news.”

“Ya”

“Yes, tomorrow we’re playing snakes and ladders!”

Snakes and Ladders at school, whatever next.

On Monday, Tuesday and Wednesday Fred had Ms O’Se around for his hour of teaching in the afternoon. Much to his annoyance but it really does benefit him. Ms O’Se doesn’t take any nonsense from Fred and he knows, eventually, that there is now no getting out of it. This doesn’t stop Fred giving out or pretending to have confusion or fight with his mother over Ms O’Se coming. The fighting with the mother is usually when I have to step in, as Fred blames Lisa for most bad happenings. He gets so cross and at times violent so it’s best I deal with it before he gets out of hand. The best I can do is threatening no more Jaden or Godzilla or in the extreme, banish Fred to his bedroom. When sent to the bedroom he calms down eventually but his strong will sometimes takes time to see reason and he has been known to spend a couple of hours in the cooler. Like Steve McQueen in The Great Escape the time in the cooler doesn’t seem to bother him but unlike in the movie Fred usually ends his time with a cuddle.

On Thursday though Fred was free of it all. No early rises for school, no Denise and no Ms O’Se in the afternoon. Ruby had already had three days of it and now Fred was going to enjoy his midterm.  About 9.30am I decided to get him up for breakfast. Routine is still important for Fred and messing around with sleep patterns can be a trigger. As I tried to get him out of bed all I got was...

“I’m tired Dad,” as he rolled over for more sleeping, back in under the warm duvet.

Again I tried to drag him out of the bed...

“But Dad, I’m not finished dreaming yet.”

What a great line. This time though he got up and came down for breakfast. Over breakfast he asked about Jaden coming over. It had been a couple of weeks and Fred loves having J over as does Jaden love coming to Fred’s house. Lisa sent Jaden’s Mum a text and went off for her run.

A bit later I got a text. Jaden was ready to be collected. Fred and I set off to get the man...

“Take the short cut Dad,” I was instructed and Fred showed me another way to get to Jaden’s house.

“Now when we get there, you wait in the car and I’ll go in and get Jaden. Ok my Dad?”

“Ok, my Fred.”

At the house Fred ran in and a few minutes later the two came out, laden down with sweets. Jaden was full of fun, obviously delighted to see Freddie too. As Fred got in I noticed he had a Nintendo DS in his hand, he’s taken it off the shelf in Jaden’s front room.

Unfortunately though he loves it, the DS jumbles Fred’s brain. After time playing it his speech is really bad and he can be very dopey or forgetful. Somehow Jaden knew this, maybe Lisa had mentioned it before.

“You can’t play with that Freddie, it’s bad for you,” he said and quite sternly too.

“But I just want to look at it,” Fred countered.

“It’s broken and it will hurt your eyes.”

Ok,” a disconsolate Fred said, putting it down, but keeping it near.

For rest of the day the two played and had great fun. At one stage, not long after they arrived Fred came in looking for a bowl. When I went in later to check on them they had the laptop on the ground, a big blanket wrapped around them and a bowl of skittles wedged between them. A nearly empty bowl. The two had been guzzling to their hearts content. Luckily they hadn’t opened the second party bag and I confiscated it along with the bowl, what was left of it. For the rest of the day Jaden was as high as a kite, full of giggles and fun. Thankfully Fred’s medicines kept him someway sober, one good side effect in the circumstances.

At dinner time the two had a treat of burger and chips. Jaden wolfed his down and asked what I was having for mine...

“Oh you wouldn’t like that hot chilli,” Lisa said, “it’ll burn your mouth.”

It was a hot one too; much hotter than I meant to make it but I’d assumed the green chillies weren’t as hot as they were. In fact I was taking my time eating it.

“I love hot chilli,” Jaden said, “my Dad makes hot chilli all the time.”

Fred looked worried.

He looked even more worried when Jaden polished off the plate, in seconds flat and asked for more.

“But Jaden you can’t eat more, you’ll burst.”

“I love it,” Jaden said, tucking into a second plate.

“But Jaden,” Fred was really worried, “you’ll get bigger and bigger and you’ll burst.”

There was real concern in Fred’s voice. Jaden is a slight figure and he was woofing away the chilli, licking the plate when finishing the second helping. Lisa reckoned Fred was worried that something might happen to Jaden and then Fred wouldn’t have his friend anymore. Fred was genuinely worried.

Later Lisa and Jaden were having a chat when taking him home...

“Fred is getting better all the time. I notice it each time I come over,” Jaden said.

Lisa was in tears telling me later.

Between Jaden bursting and Fred getting the better, the two really look out for each other.

What more could you want from a friend?

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15Feb/140

It’s Not Easy Being Fred

Today Fred is in recovery. Nothing too much, he’s just had a throat infection all week and he hasn’t had much of an appetite.  Last night the two of us discussed what he might have for breakfast but when he sat down to his favourite of rasher, beans and egg all he could do was shake his head. The eyes were willing but the stomach was saying no. Right now he ate a pear and said he was stuffed afterwards. It’s been a week since his bout of seizures but that combined with the infection means he’s eaten very little in the last seven days.

Sunday night was when I first noticed his high temperature. There was a time when high temperature would bring on a seizure but we think that time has passed. In bed that night he was roasting but not sweating nor were his hands cold to touch. I rolled him over and a few minutes later he’d cooled down so I thought little of it. But Monday he was bad all day and we kept him home from school. With this he was delighted but not so happy when Ms O’Se came around in the afternoon. For his temperature we had him on Ibruprofen and it seemed to take control. That afternoon the two of us went for a drive in the car, collected a parcel for Mummy and did some food shopping. It looked like he was on the mend. Tuesday morning though and he was very down, not eating and still running a temperature so we made a doctor’s appointment. 5pm was the earliest they could fit in the man.

At the doctors surgery Fred was very lethargic and feeling sorry for himself. Funnily enough, though we’ve been patients at the surgery since last summer this was the first time Dr Glancy was meeting Fred. At the Dingle Surgery Fred was on first name terms with all the staff; just shows how much things have improved. As Dr Glancy said...

“Nice to finally meet you Fred even though I feel I know you quite well. I’ve written you quite a few prescriptions in the last while.”

“Thank you,” Fred said through the pain.

“What’s the matter?” the doctor continued.

“My skin is roasted,” was Fred’s honest reply, “I have a temperature.”

Sure enough she checked him over and found his throat was blistered. In good sensible doctoring she didn’t prescribe anti-biotics and recommended we continue with the Ibruprofen. A lot of kids were presenting with bad throats and she continued that the best thing to do was keep an eye on him.

There isn’t a second in every day that we don’t...

As the week went on we kept Fred off school. He was very tired and took every chance he could to take a nap. Ms O’Se came around for his teaching hour but I don’t know if she got much out of him. His temperature evened out but his appetite didn’t return. Some days he might pick at something but by and large he’s been on starvation rations.

The sleeping did concern us and when he started complaining of a pain in his chest Lisa got very concerned. Fred said he could feel the battery coming on and it was hurting him. Unfortunately maybe the double jump last week was just too much. Possibly too, as his throat was sore, the extra pulse was making it worse. We talked about switching it back down a level and, even though that would entail a trip to Dublin, it would have to be done. Lisa spoke with Suzanne the VNS nurse, but she didn’t think his symptoms were related to the jump. By Thursday though Fred was very upset by the VNS pulse but after a good sleep that night he seemed to have put it behind him. I think that, maybe as he was now becoming aware of the sensation, with the higher pulse, the initial discomfort was just a side-effect, as was his Marlon Brando voice when it was first turned on.

We don’t know but the pain hasn’t been mentioned now in two days...

Yesterday for lunch I made him a white bread sandwich of rasher with lashings of mayonnaise and butter. The heart attack on a plate wouldn’t be his usual but I just wanted to get something into him. He looked surprised when I brought it in but devoured it saying “Don’t tell Mummy.” Of course Fred couldn’t keep it in and when Mummy came home the guilt got the better of him and he blurted out...

“Daddy gave me a white bread sandwich,”

Somehow I don’t think Fred has a career in espionage...

That was all he ate though for the rest of the day. For dinner I made his favourite creamy mushroom pasta but he turned his nose up at it...

“Maybe later,” he said.

Ruby had come home from school with four friends and Fred bucked up when he saw them. He was on strict instruction not to bother them, not that he was up for it anyway. The girls ate a big lunch and Fred hovered in the background, getting the odd stare from Ruby. For the rest of the evening they were in Ruby’s room getting ready for dinner. The ladies were celebrating mid-term by going out to a restaurant, very grown up of them. Fred was delighted to see them all dressed up before going out and approved of how they looked. With great pride I drove the five beauties to the door of the eatery and went home waiting for the text to come collect them. By nine they were all home, giggling and full of stories, Hannah, as always, worried about something. The days of boys taking preference for dates probably isn’t too far off but they’d want to be on top of their game to even get noticed by that gang of five. Proper order too, as Lisa would say.

This morning the girls came down for breakfast and Fred was delighted to hear they are staying another night. The comfort of having them around is great for him, even if he’s not allowed join in the fun. Jaden is due over this afternoon and that will be just perfect for the man. It’s been a tough week for him, no school, no appetite, no friends, sore throat, sore chest and being constantly tired.

It’s not easy being Fred.

 

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9Feb/140

A Tale of Two Halves

Fred is downstairs watching Scooby Doo. More staring at than watching as he is wrecked after a cluster of seizures yesterday. Day twenty, almost made the magical twenty-one day mark, better than day thirteen last time round.  It seems the entity that is epilepsy is doing a cycle of thirteen days followed by one in the low twenties. As long time observers of epilepsy it never ceases to amaze us how it seems to have a mind of its own. Despite our best efforts it always manages to beat us. That mind has a strong will too...yesterday we intervened with the Stesolid after number three in an effort to save Fred from a tough day but it came back to have its cut. Six more seizures our boy had to endure before he was left alone around 4pm.

Being the man he is Fred woke about 7pm, watched some Scooby Doo and alternated between Lisa and me, cuddling into us like a new born. By 10pm he wanted to go to bed and he slept well though he will need more rest today. As usual he wasn’t hungry for breakfast, saying through a raspy throat...”I’ll have that later.”

On Monday Lisa drove him home from school at the usual 1.15pm. I was in the kitchen making him soup for lunch when they drove up. Lisa had to help him out of the car and walk Fred into the house. He looked terrible, his face was almost green and his legs weren’t working. As Lisa walked him I fully expected the man to collapse in her arms. Apparently just as school finished the confusion had come on and the teachers took care of him until Lisa was on the scene. With her mother’s sense of concern Lisa was actually on the scene before the teacher’s knew it, she’d been watching the school and knew something was up by the movements of the staff. In fact Lisa had spent the whole morning outside of the school, though I had tried to convince her otherwise; she just knew...

Once on the couch we prepared Fred for the inevitable seizures that were coming. Put him in his pyjamas, get him to the toilet and then under a warm blanket, the usual routine. Lisa swiped him continuously with the magnet. When swiped the VNS will give out a thirty second pulse at .25amps more than it is set. So he is on .75amps and each swipe would give him a thirty second shot of 1mp. About every ten minutes is the advisable time frame. Remarkably after a snooze of twenty minutes or so Fred woke up, looking for lunch. The colour had returned to his face and he was a completely different boy from the one dragged in the door about half an hour earlier. Whether this had anything to do with the swiping we’ll never know but I’ve never Fred seen look so bad and not go into a cluster.

He tucked into a lunch of soup and a wrap. After downing the soup he looked for more so I gave him another bowl, without a wrap, one was enough. Fred complained but I said no...

“How about some toast?” He asked...

“No toast.”

“Aww that’s not fair”

“I’ll give you half a cracker,” I tried, trying not to crack under that pleading look.

“How about two halves?”

So I gave him two halves.

Afterwards he slept for the afternoon. A big, deep sleep and he only woke when Ruby came in from school. That night he went to bed a bit later than usual but still got a good night’s sleep under his belt. We kept him home on Tuesday, out of habit more than anything else and he had a great day of it. That is until Lisa broke the news that Ms O’Se was coming round for class in the afternoon.

“What? I don’t want Ms O’Se,” was the indignant reply.

Thus the war began. The entente cordiale between mother and son broke down into an escalation of hostilities on all fronts. Diplomatic lines of communication were severed. All sorts of threats were issued on both sides but there wasn’t any sign of a breakthrough despite a call to the UN Court of Arbitration. Eventually with the clock ticking down to all out war Fred played his trump card...

“I have the confusion,” he said, lying back on the couch.

“Really?” his mother replied.

“Yes, really Mum,” he said looking sad.

This always brings on a dilemma for us. Do we believe him and put the rest of the day on hold or do we call his bluff only for Fred to go into a seizure a short time later. Of course we have to believe him; we want Fred to be aware of his epilepsy and to tell of us of any warning signs so we can protect our man. As any eleven year old boy worth his salt will do though, he will try and get out of school work. Lisa and I asked him over and over if he was sure. Yes he was. Lisa said she’d text Ms O’Se but he better be telling the truth because we needed to trust him.

As I had a few jobs to do I left the two cuddled up on the couch. But when I came back about an hour later Fred was sitting up at the kitchen table with Ms O’Se, working hard at his homework...

“I thought you’d cancelled Ms O’Se” I said to Lisa...

“No, I just pretended to, to see what he’d say when she arrived, he went in without a bother.”

“Do you think he was fooling us?”

Lisa shrugged her shoulders as if to say who knows with Fred.  Who does? I went into the kitchen to put away the shopping and an alert Fred was almost sitting on Ms O’Se’s lap, ploughing through his homework. Shortly afterwards she left, they had done over an hour of work and she was really pleased with Fred. As I started to prepare dinner Fred appeared beside me...

“Dad?” he said, head down in a very contrite manner.

“Yes?”

“Ok, you got me, I lied about the confusion,” he said, head still down.

“Promise you won’t do it again?”

“I promise.”

We’ll see...

All week Fred had been counting the days down to the trip to Dublin. Thursday and we had a couple of appointments at Temple Street. One for putting Fred’s VNS up another notch and another with the child psychiatrist team who wanted to get a picture of Fred and his family for an educational report. We headed off at 9.30am, the car not so full as normal; we were attempting to do this in the one day. As Ruby is doing her ‘mocks’ we didn’t want to disturb her study plans by being away for a night. Much and all as we wanted to visit Inchicore this plan meant we wouldn’t be seeing Conor and Cathy either. Fred thought we might but Lisa and I said that it may not be possible this time round.

With the meeting on Thursday and Fred getting the confusion on Monday it was a stressful week for us.

What if Fred had a seizure before going up? That would mean cancelling the appointments and waiting another month for the psychiatrist team. Anything after Tuesday would have meant he wouldn’t have been alert enough for them. What he had one in the car on the way to Dublin, Thursday was day 18 and we’d definitely be in the danger zone. The only option then would have been to turn around and go home. What if he had one in the hospital? They wouldn’t have let him home, meaning a couple of nights in hospital and Ruby disrupted. I told Ruby in that case I’d drive home to be with her so she could get on with her exams, but that would mean leaving the others in Dublin. What if he had one on the way home? That would mean a trip down the motorway with Fred seizing in the back and we brought all medicines to cover that eventuality...

In the end we got to Temple Street in one piece. After lunch in the Basement Cafe we headed up to see Suzanne, the VNS nurse. After hearing how well he was doing and that we weren’t heading away for another two hours Suzanne proposed going up a double amount. Up from .75amps to 1.25amps. If he didn’t react well she could turn it back down again and she would stick around until 5pm in case we needed her. The double jump would mean we wouldn’t have to see her for another month and this would coordinate nicely with the psychiatrist’s plans for a number of monthly sessions.

Beep went the magic wand, Fred coughed but all was ok. Suzanne was pleased with his initial reaction and sent us on our way.

In the psychiatrist’s chair it was actually Lisa and I under the spotlight. She wanted to get the complete picture from day one and before. We had to go into our family histories, our own past and that was all before mentioning Fred. The usual tears were shed as we went through the happy birth to his first seizure at nine months and the subsequent years. Fred was playing games, probably also being observed by the two. Of course the inevitable confusion hit, what a surprise, and Lisa couldn’t swipe him, as it wasn’t advised after such a jump in output earlier. So Fred cuddled into his Mum while we went through his life story and how epilepsy has impacted on us. The hospital visits, the ambulance trips, the move to Tralee, the effect on Ruby and everything else. They got it all out of us, tears and all.

Remarkably Fred slept through the confusion. Once the meeting was over I ran off to get the car; we needed to get him comfortable and away from the hospital, the last thing we wanted was a couple of nights on the ward. Driving back around the corner I half expected to see Lisa with a crowd around her, helping Fred back inside. But no, the two were standing on the pavement waiting and we shot off into the Dublin evening. Lisa got Fred comfortable and soon he was in a deep sleep. As we drove down the quays Lisa texted Suzanne to tell her all was ok with the double jump. Driving through Inchicore the car almost automatically turned up to Conor and Cathy’s but we had to head for the south. The traffic was ok and once beyond the Red Cow roundabout it was plain sailing all the way to Tralee.

Fred woke up just as I pulled in the Mayfield service centre but wasn’t hungry for dinner. He did want popcorn though, for some reason, so I got him small bag. With coffees for the parents, popcorn for Fred we headed off to Ruby. As we drove I’d look in the rear view mirror from time to time to see Fred’s face looking out at the passing traffic. It’s one of those reassuring sights I love; he’s awake and taking in the world.

The next day, Friday we tried to get back to normal. Lisa took Ruby to Dingle and I drove Fred to school. Denise had been off for a while and Fred hadn’t seen her for about ten days. The two of us walked in but no sign of Denise. Then from behind us she walked in...

“Hi Denise!” Fred exclaimed.

“Hi Fred, I’ve missed you,” Denise answered with a big smile on her face. She has been through some tragedy recently and she looked really happy to see her friend.

“I missed you too,” Fred said, walking away with her, taking off his coat as he went.

It looked like the two were glad everything was getting back to normal.

As was I.

 

 

 

 

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