Sunday, 28 October 2012
A blip on the road
So, things have been pretty settled recently. Very few hospital visits, just keeping meds in check and increasing as he grows. He has been on the top dose of Topirimate now for about 3 weeks, and although there has still been no decrease in seizures, we had kind of come to the conclusion, that for Zak, life without seizures is just not going to happen, and so long as there are no dramatic increases and they aren't upsetting him or making him miss out on life, then we will try to go for as long as possible before rushing to speak to the neurologist.
Anyway, he suddenly developed a 'twitch' recently. I had no idea what it was or what was causing it. It was quite subtle, just a repeated, slow twitch of his left arm, head and chin. But after 28 hours of continual twitching, every 2 or 3 seconds, enough was enough, and I called his consultant for advice. She told me to give him his rescue medication (Midazolam) as it sounded seizure to her. So I did, after walking roung the house crying for an hour, knowing what I needed to do. I hate Midazolam, because the last few times I have given it to him, it has made the seizures MUCH worse....as it did this particular day. He went from having this small, subtle twitch, to having huge tonic and Gelastic seizures. The Gelastics were new, and for a boy of 5 and a half, who has never been able to smile...I was mesmorized by the fact he was now not only smiling, but out loud laughing!! My multitasking came into full swing then, talking on the phone to my hubby, holding Zaks hand, reassuring him, and grabbing for my camera! I didn't care what form it came in, but my boy was smiling!!!
The meds didn't work, and as soon as he was out of the midazolam daze, the arm twitching continued...so after a quick call to the doctors, we were off to the Infirmary.
He baffled them, they hadn't got a clue what was going on, and had to call the neuro for advice.
They came to the conclusion that this new twitch was something called Dyskinesia, and was the result of one of two things....either the brain injury/Cerebral Palsy evolving as he is growing, and this would be just another phase, another name to list in his ever growing list of conditions.....or.....it is a side effect of the Topirimate. Either way, the treatment would be the same. We were prescribed Diazepam. Now, he has been on this before, and was taken off it as it made him too sleepy. The new dose was over double the previous amount, but trusting the neuro knew what she was doing, we went home and administered the first dose....so far so good.... the next day, he seemed ok....still twitching, but ok. So the following day he went back to school.
At about 2pm, I was in Morrisons, and I get a tanoy saying, "could Mags Hall please report to the customer service desk immediately"....I needed to get to Zak asap as they wanted to blue light him to hospital.
When I got there he was sound asleep, but very deeply. The School nurse, who knows him well, said he had been very yellow, sleepy, having increased seizures and his breathing was fast and shallow. I knew instantly what it was... the bloomin Diazepam! We ended up back in hospital, explaining the previous few hours, and decided to take him back off the Diazepam.
He was much more settled, although still having the movement in his left arm.
At times like this, there are sooooo many questions that no-one can seem to answer. It's maddening that we play Russian Roulette with him, but know that we have no choice.
The old phrase of "suck it and see syndrome" has never been so true.
If one anti-epilepsy drug doesn't work, we loose it and try another...and that's how it goes, until we run out....then what?
And it seems this is the way it all works. So we are waiting now for an appointment to speak directly with the neurologist. Should be interesting.... so many questions....
Is this new twitch Dyskinesia or seizure?
Should we be treating it?
Is it the brain damage or the Topirimate?
Do we stop the Topirimate or just live with the twitch?
Does this mean things are changing?
Do we continue with Midazolam?
Why does it make his seizures worse?
What else can we try?
And this ladies and gentlemen, is what goes round in my head, every second of the day...
Anyway, he suddenly developed a 'twitch' recently. I had no idea what it was or what was causing it. It was quite subtle, just a repeated, slow twitch of his left arm, head and chin. But after 28 hours of continual twitching, every 2 or 3 seconds, enough was enough, and I called his consultant for advice. She told me to give him his rescue medication (Midazolam) as it sounded seizure to her. So I did, after walking roung the house crying for an hour, knowing what I needed to do. I hate Midazolam, because the last few times I have given it to him, it has made the seizures MUCH worse....as it did this particular day. He went from having this small, subtle twitch, to having huge tonic and Gelastic seizures. The Gelastics were new, and for a boy of 5 and a half, who has never been able to smile...I was mesmorized by the fact he was now not only smiling, but out loud laughing!! My multitasking came into full swing then, talking on the phone to my hubby, holding Zaks hand, reassuring him, and grabbing for my camera! I didn't care what form it came in, but my boy was smiling!!!
The meds didn't work, and as soon as he was out of the midazolam daze, the arm twitching continued...so after a quick call to the doctors, we were off to the Infirmary.
He baffled them, they hadn't got a clue what was going on, and had to call the neuro for advice.
They came to the conclusion that this new twitch was something called Dyskinesia, and was the result of one of two things....either the brain injury/Cerebral Palsy evolving as he is growing, and this would be just another phase, another name to list in his ever growing list of conditions.....or.....it is a side effect of the Topirimate. Either way, the treatment would be the same. We were prescribed Diazepam. Now, he has been on this before, and was taken off it as it made him too sleepy. The new dose was over double the previous amount, but trusting the neuro knew what she was doing, we went home and administered the first dose....so far so good.... the next day, he seemed ok....still twitching, but ok. So the following day he went back to school.
At about 2pm, I was in Morrisons, and I get a tanoy saying, "could Mags Hall please report to the customer service desk immediately"....I needed to get to Zak asap as they wanted to blue light him to hospital.
When I got there he was sound asleep, but very deeply. The School nurse, who knows him well, said he had been very yellow, sleepy, having increased seizures and his breathing was fast and shallow. I knew instantly what it was... the bloomin Diazepam! We ended up back in hospital, explaining the previous few hours, and decided to take him back off the Diazepam.
He was much more settled, although still having the movement in his left arm.
At times like this, there are sooooo many questions that no-one can seem to answer. It's maddening that we play Russian Roulette with him, but know that we have no choice.
The old phrase of "suck it and see syndrome" has never been so true.
If one anti-epilepsy drug doesn't work, we loose it and try another...and that's how it goes, until we run out....then what?
And it seems this is the way it all works. So we are waiting now for an appointment to speak directly with the neurologist. Should be interesting.... so many questions....
Is this new twitch Dyskinesia or seizure?
Should we be treating it?
Is it the brain damage or the Topirimate?
Do we stop the Topirimate or just live with the twitch?
Does this mean things are changing?
Do we continue with Midazolam?
Why does it make his seizures worse?
What else can we try?
And this ladies and gentlemen, is what goes round in my head, every second of the day...
I have a new camera and I'm not afraid to use it!
I've always loved photograghy, and I adore my kids.... what better combination does a girl need!
One of the single most important things I do, is to take photo's of my kids, and Zak in particular. These pictures hold memories in one frame, they bring back a million memories with one glance, they imortalise our lives and days gone by. We forget the little things every day, and one look at a photogragh and it all comes flooding back.
I will happilly click away in the good times as much as the bad times, because when this journey is over, they will be all I have left to hold on to, and to help me take another breath to be able to move forward.
And to be honest, with a little practice, I think I could be quite good at it!
What do you think?
One of the single most important things I do, is to take photo's of my kids, and Zak in particular. These pictures hold memories in one frame, they bring back a million memories with one glance, they imortalise our lives and days gone by. We forget the little things every day, and one look at a photogragh and it all comes flooding back.
I will happilly click away in the good times as much as the bad times, because when this journey is over, they will be all I have left to hold on to, and to help me take another breath to be able to move forward.
And to be honest, with a little practice, I think I could be quite good at it!
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