Coo and his Neuro take 2...

Hi Guys, things are still a bit unsettled here!
Coo's neuro appointment, well, where to start!
I guess it was a fair assessment really and probably no more than we expected.

Coo's neuro basically said there's little more to be done. His seizures will probably always be a problem and Coo has admitted he's accepted this could be the case a long time ago.
I think I did too but I always thought, well, maybe, you never know or maybe something would help a little bit but there it is.

Over the years Coo's tried at least 8 AED's (Anti Epilepsy Drugs) and none have helped much at all, well not enough to cope with the attached side effects anyway!
The neuro say's after 4 AED's, the diagnosis is of a drug resistant Epilepsy and with 8 or more already he doesn't think meds will ever be an answer now for Coo.


So where does that leave us?


Well, for one thing, he thinks (as we do), that the last test drug Coo's been using for nearly 2 years, could be causing the problems with Coo's drug levels. It could be making the drugs either too high or too low in his system - what we call the AED see-saw effect! This drug, is now going to be dumped and Coo will return to using only his core drug for now!

This might be a good thing for us as Coo will at least have less side effects and some nasty drug interactions but it's by no means an easy process and will take around 6 weeks to complete.
In the end if more drugs are not the answer, it does kinda make sense to take things back a little and see what happens!

Wish us luck as I think we could be in for a bit of a bumpy ride!

In other news... my wee plants are now out of the propagator and into new wee pots of their own...well done me!
They've all survived by the looks of things! LOL
Trouble is, I used to have a nice wee tidy propagator on a windowsill and now?
I've got loads of wee pots with an assortment of veggie plants in 'em - need I remind you even I'm not sure what seeds are what! LOL

I think I maybe need a wee greenhouse next...we at least till I work out what exactly I've successfully grown! LOL


Do Easter bunnies bring greenhouses?
I'm not so sure but I guess we'll see! LOL

Keep strong where you are and think of some sunshiney days for us all!

maz x

Carer Coo & Neuro too...

Hi Guys, we have an appointment with Coo's neuro tomorrow.
Thank goodness he's a nice guy, I'm not sure what he'll offer Coo next but at least I know he won't rail-road him into anything!

It's a bit difficult, Coo's tried almost everything and there 'aint much more left to try!
In November when he suggested another new drug, Coo was less than enthusiastic - he's had such a roller-coaster ride this last few years, he's wary of any more changes.
He feels his body is hurting now and with any changes, there's a real risk of things quickly spiralling out of control.

I understand this only too well as you can imagine!
I guess we'll just have to wait and see what tomorrow brings!

***Now, enough of that, let's lighten the tone a bit...

My wee plants are still popping up all over the propagator, more and more every day!
Pity I don't quite know what they are though!LOL
My Mum popped in last night and assures me some of 'em are definately peas and as for the rest?...who knows! LOL

All I do know is they've prooved a bit of a happy distraction over the last few days!

I hope the weathers behaving where you are, it's raining here...yet again and you know what that means...brolly and wellie time! LOL

maz x

Seeds do indeed grow!

Hi Guys! With the last few weeks being a bit difficult and some more time stuck at home, I've been...playing with seeds!LOL
Knowing how badly behaved our weather can be, I bought one of these:
What fun I've had! well, in between running back and forth helping Coo, I planted a load of seeds I had hanging around from last year!
All-in-all, I found 10 packets! A right assortment of vegetables and herb seeds they were too!

It was so great! as the rain battered down outside, I spread a newspaper out and had some fun playing about with seeds and compost and you know what? It's very therapeutic!

The best news of all is...they've already started to sprout! Woo Hoo
Only trouble is what exactly is sprouting?
Well, I did put them in wee rows but...gardener of the year?..err...no!
I didn't keep a note of what was planted where! silly me! LOL

No doubt time will tell! LOL
I could get used to this seedling lark as even on rainy days, planting sure is fun!

maz x

That Carer roller-coaster ride...

Hi Guys, it sure is a roller-coaster ride at the minute!
Being a Carer sure pushes you up, down and side-ways at times and you just gotta hang on for the ride! LOL

In the end, Coo did decide to reduce his AED (anti epilepsy drug) as he just couldn't function well when the levels were so high. I guess that's why he put's up with having his bloods done every 2 weeks - at least he knows quickly there is a problem and has a way of dealing with it, well...sort of!

Things seem to be settling a bit, for one thing he's not so sleepy and that can only be a good thing if you happen to have sleep seizures! LOL

It's stopped raining, the sun's come out and Coo's awake too -Woo Hoo!
so all is well in our little world, for now anyway!

I'm trying hard to hold on tightly to those little sunshiney moments!

I hope things are well with you too.

Love
maz x

Carers and rainy days...

Well, how does it go?
Into each life a little rain must fall...

This week? well, just like these wee cat's, I feel I need a great, big umbrella to hide under too!


So much for the few days Coo was a bit more settled, this week has been a struggle.
Coo's seizure level is through the roof...again, he has double vision on and off and is asleep a lot of the time.
We went for his usual 2 weekly blood tests and for once Coo told our doctor how things really are - normally he needs to be prompted to open up as he prefers just to get the bloods done and go.
Our GP is a nice guy, he really is a very patient person and took the time to listen. Coo say's he's feeling low as his body is hurting from all the seizures, his muscles are all sore and at the minute, he's just generally fed up of the whole thing.
I guess I can't blame him, it's been a long road for Coo and I, even after all the new drugs he's tried, seizure control is no better than it was years ago so I suppose he's entitled to feel a bit down, God knows I would!

The blood results are in and the AED (anti epilepsy drug) levels are high yet again so now we need to decide if we want to stick, keep the current dose and hope things settle or gamble and lower the meds and risk another seizure increase!
Poor Coo, what a decision!

Wish us luck and let's hope this particular little rainy season ends soon, land sakes I sure could use a rainbow or at the very least some new jazzy wellies!LOL

To sunny weather!
Love maz x

Sunshine makes a return...

Hi Guys, the sunshine has made a return here at last - it's been a long winter!

Coo is still a bit more settled at 10-ish seizures a day so we've both found things a bit easier going this week.

I'm real glad the sun is back, I hate grey days, I think they make for grey moods and on days like that everything seems so much more of a struggle. A wee bit of sun being around always raises my mood and makes me feel a bit more optomistic about things.

I've been pottering in the garden again...not much of a Charlie Dimmock but I do try! Anyways, while I was food shopping, I spotted some wee plants that I just couldn't resist! so as it was nice today...I've been busy filling up all the sad looking planters laying around the garden from last year!

There's nothing fancy, just some wee daffodils, a few crocus and some anemones but I must say they look brilliant now they're all colourful and cheery! LOL

I think all that fresh air and pottering about has done me the world of good! LOL

I hope it's nice where you are too!

Love,
Maz x