Coo's Bloods...

Hi Guys, as if things were not up'n'down enough at the moment!

I've tried unsuccessfully, to get Coo's blood results already this week and it now turns out the tests need to be repeated Arrrgggghh!

Our doctor will phone tomorrow and let us know why he wants them re-done. I'm not sure if there's a problem or the lab's lost 'em but time will tell, I suppose!
Mean while, poor Coo's like a pin cushion as it is and will need poked and prodded again so we're less than impressed!

On the upside, his mood has improved a bit and he's less sleepy this week so his drug level must be in a better place by now!
He aint Mr. Grumpy so it's all good! LOL

Oh and incidently....it's still raining here! lol

That's after 18 days practically constantly tipping it down too!
So...just like this little piggy who has the right idea...
It's umbrella and wellies here I come! LOL

maz x

Dreaded drug see-saw again...

Hi Guys, it never rains but it pours!
Who ever said the life of a Carer is dull?

We seem to be up and down on that dreaded drug see-saw again.
Too little drug in the system, it's seizure city and too little well...ditto!

For the last two days, Coo's slept and seized around the clock.
Our Doctor has advised we drop his AED (anti epilepsy drug)right away.

We were going to wait until he had his bloods done on Monday and check the levels first but as things are not getting any better we've ditched that plan and decided to go with his advice.
We're going to drop the dose tonight in an attempt to settle things down a bit.

Wish us luck,

maz x

When the Carer needs care...

Hi Guys, well...Coo shared his cold with me - how nice!

I've had a bit of a temperature, sore throat and sneezes since Tuesday but thankfully I think I'm eventually kicking it! LOL

Poor Coo's still suffering the last of the sniffles and it's taken him twice as long to kick it as me!

All I can say is thank goodness were both now on the mend! lol



All we need now is a dry day to get out in the park for a bit and kick up some of those leaves!

I hope you're avoiding the sniffles where you are.
maz x

That Carer Roller Coaster...

Hi Guys, things are a bit brighter here!
Thankfully Coo seems to be over the worst of his cold.

His AED (Anti Epilepsy Drug) level is still too high but he thinks this is down to his temperature and sniffly cold so we're going to hang on in there, wait it out and see what happens!

We're at home a lot more as Coo seems to have bursts of energy and then fall asleep again really quickly so it's still a bit of a roller-coaster ride as one minute he's bouncing about and the next he's out cold!

His seizure level has risen a little, well...he's got around 12 - 15 seizures a day. While that's not easy, it's a manageable level, considering last year he was having 30 a day so we gotta keep looking on the bright side!

But enough of that...

Our wee club, the one we run for adults with disabilities had their halloween party last night and it was brilliant!


Coo had a sleep in the afternoon so he'd be ok to 'party' lol
We had an assortment of witches, devils, ghouls and lots more besides!
We dooked for apples, danced, sang karaoke, had a much needed laugh and generally chilled out and it was great!

I always feel better about things after our wee club as it always puts things back into perspective.
Despite all their disabilities and health issues it'a a very happy club, there's always lots of fun and laughter!
Kinda makes you realise what really is important doesn't it!

A chilled out and happy, smiley,
maz x

Hard hat time again...

Hi Guys, it's hard hat's and flap jacket time again.

Coo has been poorly over the last few nights and I was starting to worry, what was the cause this time.
He's been tucked up in bed most of the day and it turns out the high temperature has turned into a cold yet again and the sniffles have arrived!

At least now we know the reason for the seizure increase, it's less of a worry and he's due to see the Doctor tomorrow.

While Coo's been tucked up in bed, I've been taking things a wee bit easier myself. The alarms we use now, let me wander around freely at home and in the garden - though not an option today as it's practically Baltic here!
I know they'll alert me when Coo needs a hand and that gives me a bit more freedom.

I've pottered about the kitchen and got the soup pot out as I know when I don't feel well a comfy bowl of soup is usually all I want!
Poor Coo, he's getting soup if he likes it or not! LOL


Hubble, Bubble, Toil & Trouble...
well, it is that time of year isn't it! LOL

Here's to comfy, cosy and warming soup...Mmmm!
Take care and keep cosy where you are too!

maz x

Coo & the Neuro...

Hi Guys, we saw Coo's Neurologist today.

He's a real nice guy and easy to talk to, anyway he asked Coo what he wants to do now as he still has 250-300 seizures a month and he feels things are not really any better.

Coo told him he doesn't want to try anymore drugs, I kinda understand how he feels as the last few meds have been disasterous.
He said his body is really feeling it and he's had enough of guiney-pigging for now.

Over the last few years he's gave a good try and then discarded loads of meds:
*Vigabatrin - was awful so very difficult to cope with as (in medical speak!)there were psychotic episodes and (in my speak)awful seizure activity!
*Lamictal - low mood, not eating and suicidal,
*Keppra - depression and rages and cut off emotionally.
*Zonegan - major seizure increase and hospital again.
To name a few, there have been many others too!

These drugs have really helped so many other people, I guess Coo's just been unlucky.

The neuro does say it's very unlikely he'll get much control as the Epilepsy seems to be drug resistant.
Reading this back, I do understand why Coo feels he's had enough for now.

Thankfully, after each meds change, given time, he's bounced back to his wee sunny self! I just wish, in the process, we'd found a drug which helped even a wee bit.

For now, he'll stick with the meds he currently has and the 2 weekly blood tests - upping and downing the doses as needed.
Who knows, things might still settle a bit.

The up-side is, Coo's feeling well!
He's sleepy and we're at home more to accomodate this but he's happier in himself and we are both really up-beat and managing things.
All in all we're both ok!
I hope whatever your situation, like us and these wee cheeky monkeys, you're in an up-beat place too!

Love and a smile,
maz x

Neuro time again...

Hi Guys, Coo has an appointment with the Neurologist again on Friday. It doesn't seem that long since we last saw him but it is...it's seven months ago!

I guess it's the same with most Carers, we just keep going, managing as best we can and time kinda runs away from us.

Coo's Neuro is a really nice guy and he does listen but what is there really to say?
I looked back here, at a post from when we last saw him in March and between that and the seizure diary we keep every day, it's clear there really isn't much improvement.

In the last seven months, we've added and dumped Zonegran - another AED (Anti Epilepsy Drug), we've constantly upped and downed doses of the existing meds and poor Coo's had blood tests done every two weeks and nothing much has really helped.

One good thing though, the frequent blood tests have worked as any infection or high/low drug levels have been found quickly so we've avoided any hospital admissions this year and for that we are both truly thankful!

You never know.
Maybe the Neuro will have something different to offer.

I'm valliantly trying to stay positive and hold onto sunny thoughts!

Wish us luck,
maz x