That AED See-saw again...

Hi guys, we're back on that dreaded AED (Anti Epilepsy Drug), see-saw yet again! You know the one, too high a drug level mean yet more seizures and too little...you've guessed it - ditto!

Coo's blood results are back today and they're not good.
He has raised white cells and raised drug levels in his blood again but...just what to do this time?

The white cells mean, he clearly has an infection somewhere so we can opt for yet more anti-biotics or we can reduce the meds a little and hope things settle down. Trouble is he's already had them in the last few weeks so we're not keen on another anti-bio run just yet!

So what's the risks?
Well, if we stay put on the current dose, there's a risk the drug levels will increase and Coo could end up toxic - not good! 

and if we reduce the meds?
Well, as the infection clears his body, the levels will drop naturally and he could end up with really low levels and in a worse position than he was before!
So...
Coo's not keen on yet more pills so we've decided to, keep close to home and an even closer eye on things for now. We'll wait it out for another few days, get more bloods done and hope things have settled down a bit.

It's not so much a see-saw this time it feels like a bit of a roller-coaster ride instead but with a little luck, I'm sure we'll be back on the up soon!
(((hugs)))
Maz x

Jessica's 1st Birthday...

Hi guys, we've had a good day today!

Happy Birthday Jessica!
What a difference a year makes.

Jessica our wee grand-daughter is one year old today! woo hoo!
Here she is with mummy and daddy and a great big Minnie Mouse birthday cake, which tasted...gorgeous!

Coo and I enjoyed a lovely day spent with family celebrating our little one and had a wonderful time and it's given us a real boost!

Who knew being grand-parents would bring such joy?
She's given us some sunshine and brought us lots of smiles this last year and that is just...wonderful. - Coo and I love her so!

After a shaky start, Coo had lots of seizures this morning! Things improved and we really had a great day today!
I hope you had a good day, where you are too!
(((hugs)))
Maz x

Crash and burn, yet more bloods...

Hi guys, Coo got more blood tests done today.

Not ideal this time. It was an early appointment so his routine's all over the place and it's been a case of crash and burn today. He's been sleeping and seizing on and off  since tea-time and picked up a couple of injuries along the way so I guess it could be one of those nights - hey ho!

To cap it all, we had yet more problems today with medicines! Coo's been having some more stomach  problems so our doctor took the time to check meds and find something for him that would not cause any problems with his other meds - a real worry for us now as there's just so many!

Anyway, he found one and off we went to the Pharmacy, now you'd think everthing was plain sailing then wouldn't you? We sure did...but no! They made a mistake and dispensed the wrong drug! Luckily we double check everything and spotted their mistake, a quick phonecall to our doctor to check things and...back to the chemist...again!

I've heard from other Carers who have had problems with NHS prescriptions at Pharmacies too and that's a worry!
If we Carers can get it right and check for and identify errors, why can't the professionals keep up their side of the bargain too? This could have been nasty, thank God I spotted their error before any damage was done.

I hope things are going ok where you are.
(((hugs)))
Maz x

Tumbling times again...

Hi guys, we're struggling again.

Coo has taken a bit of a tumble and he has an increase in seizure activity too, I was beginning to worry just what was going on but lo-and-behold, he has a sniffle this morning so...now we know!



The trouble is, he's fallen during a seizure and while it's not unheard of, it's a worry. He usually manages to dust himself off and just muddle along with little injury and seldom comlpains of pain.

This time he took a tumble and has hurt his arm although he insists it's fine, it's just a bit sore.
It's definately not broken or badly swollen but it has developed a weird clicking sound when he moves it!
He doesn't want to do anything about it for now so I'll just keep an eye on things and see how he goes and he's due to see the doctor again on Monday for bloods anyway so...if it's still 'clicky' we'll see about it then!

It's always something isn't it! Who knows, maybe it'll settle down again all by itself - stranger things have happened!

I hope where you are, things are settled at the moment for you!
(((hugs)))
Maz x

Happy Birthday Coo...

Hi Guys, it's Coo's birthday today so...

Happy Birthday to you, happy birthday to you, happy birthday, happy birthday, happy birthday to you! lol

Luckily today, the weather behaved and although cold and a little frosty, it was a lovely dry today  so...we got out a wee run on our bikes...woo hoo!

We don't go far as Coo tires easily so it's lucky, Looby stays near by.
We popped in to see Baby Jessica too and had a wee cuppa along the way!

We managed to buy our bike using some of our SDS (self directed support) funding and they've been a real boon!
We're having lot's of fun cycling and who knew we'd enjoy this so much? They've been brilliant fun and as Coo's been really sleepy the last few days so a wee while out was just what we needed!
I think the fresh air has done us the world of good, it's certainly blown the cobwebs away that's for sure! lol
We've visitors coming over for tea and cake later so Coo's gone for a wee sleep.
All in all, I think he's had a good birthday.

Happy Days!
(((hugs)))
Maz x

Hard hat time again...

Hi guys, things are a bit difficult here, Coo's taken a bit of a tumble again.

He has felt unwell the last few days, usually that means there are sniffles on the way so we've just been keeping an eye on things. Anyways, no sniffles arrived but we've a massive increase in seizure activity. Poor Coo was seizing every half hour last night and we sure are feeling it today!


The worse thing is, the dreaded vomitting seizures have made an unwelcome return. They are by far the most scary and real difficult to deal with. I guess that's because, in the back of my mind, there's always the worry of aspiration pneumonia again. Coo's had struggles with this before, when during a vomitting seizure, fluids were inhaled into his lungs creating massive infection and a medical emergency too and what a nightmare that was!

I'm digging out my hard hat and flak jacket yet again. Just keeping things on an even keel as best I can for now.We'll get more bloods done tomorrow and check exactly what those pesky white cells are doing and for today, we'll just take things slowly.


I know when things are spiralling out of control, the signs are clear enough so hopefully we'll be able to hold things together until we see our doctor tomorrow and if not? Well, there's always A & E but that's always a last resort - if it can be handled at home, it will be!

Thank Goodness for our care package!
The SDS (self directed support) let's me have some sleep nights so at least I know, whatever happens...tomorrow night I will sleep! This wasn't always the case and really shows just how valuable good 'support' really is!
I honestly don't know how I'd cope without those sleep nights - I sure don't want to try that's for sure!

Anyways, we're doing ok for now but let's hope for some more settled times! I hope you're doing ok where you are too!
(((hugs)))
Maz x

Carers influence where you can...

Hi guys, I've been out visiting with my Local Authority again!

They're setting up a new community website that will include loads of information, from whats happening in the local area, to information and assistance, even help to access services. It sounds like a-one-stop-information-shop kinda deal and just what we could all be looking for!

I'm glad Carers and service users have been asked to contribute to this. All too often, these things are completed before anyone bothers to ask Carers and usually vital information that could make a real difference is just not included!

It sounds like this will be a really good resource!
There will be sections on current services, personalisation and Self Directed Support and that's great as lot's of people haven't got their head around the concept...yet!
Access to this type of website can only help people see how good SDS can be and with proper respite and support services, just what can be achieved...I know it's working well for us!

It's having the SDS in place that makes it possible for me to take some time out and contribute to things like this and I think it's important more Carers get a chance to raise their voice too and hopefully this new resource will help them to do just that!
I think things are slowly improving for Carers but we've still got a long way to go!

I think this new resource will be another step in the right direction and that can only be a good!
(((hugs)))
Maz x

Medication problems...

Hi guys, we've had some problems with Coo's meds!



Coo's been on the same core drug for over 25 years so what's the problem?
Well, without warning, it's been discontinued!
We went to pick the meds up as usual and the main one, the core drug that hinges everything together for Coo is...just not there!

We've been in contact with the hospital, Coo's neuro and Doctor and our pharmacist. It's been mighty stressful, that's for sure! Now, you'd think with such an important change, there would have been some prior warning from the people who prescribe and monitor Coo's meds wouldn't you? We'll no, it seems they didn't know - what a mess!

We went online to trawl for anything that could help us and low-and-behold we found it. Not on the NHS or drug websites mind you, not from our GP either but from an online Epilepsy forum and thank goodness we found them!
The drug has been discontinued, that information is indeed correct but the manufacturer sold the drug we need, lock, stock and barrell (minus the name!), to another company so things might, just might, be ok so long as his prescription clearly states the new name, manufacturing company and capsule type the drug should be the same and Coo should be fine - thank God for that!

I've phoned all who are involved with Coo's meds and asked for his records and prescription to be amended to include the new info. surely this should be enough - I really hope so!

I'm not really happy with the way the NHS professionals handled this situation. It's not acceptable to find issues surrounding vital meds occuring at the point of delivery in the pharmacy! If they knew of these changes, why didn't they tells the patients and if they didn't know...well, why didn't they? After all these are vital meds!

Not everyone has access to information online so I only hope, others who find themselves caught up in this medication mess, find the information they need too!
Land sakes, what a start to the new year!

I hope you're having a more settled time where you are.
(((hugs)))
Maz x

Happy new year 2013...

Hi guys and a...happy new year to all friends near and far!

We've survived the festive season and without  too many mishaps this time around. I've a feeling this could be a good year - oh, I do hope so!

The changes in routine over the last few days are beginning to kick in now.
Coo's been sleepy and seizing and just like this wee puppy here, he's been finding it difficult to keep awake so I've kinda given up, let him have a wee nap and joined you in blog-land for a wee while! lol

It really is a bit of a roller-coaster ride when you're a Carer isn't it? I mean, you never know from one day to the next just, exactly how things are going to be. Even when you're caring for someone with a fairly settled condition, you never know when it's going to kick in so you're always, (beneath the surface!) a little bit on edge and ready to spring into action whenever necessary - it just becomes a way of life for most Carers doesn't it?
I guess that's why we are so chuffed and happy, when things go well for wee change!
Good days sometimes seem as rare as pearls and they're always greatfully recieved, whenever they do pop up!

You know what?
I've learned not to analyze things too much these days, I kinda go with the flow and just enjoy the good day while it lasts!

I've a feeling tonight could be difficult too so we're batting down the hatches and digging out those hard hats yet again and in the mean time? We're just off to make a wee cuppa and then I think, we'll be off to bed!
Here's hoping for some more good days for us all.
(((hugs)))
Maz x