Struggles, Stresses & Shingles...

Hi guys, yet another stressful month here!
Stresses...
Still no decision from DWP on his PIP claim/assessment so things with Coo have been a blast...again! The stress, health hassles and continuing seizure spiral sure took it's toll and Coo's AED's (Anti Epilepsy drugs) hit toxic levels last week.

We had blood tests done to check things in the afternoon and by nightfall, ADOC - the out of hours NHS services - were on the phone with the toxic news and a 'reduce the meds now' message! We were back on that dreaded AED drugs see-saw again!
Our already leaky boat, just got a great big bit more leaky - we coped or I thought we had. We know the drill, drop doses, contact the Neuro and let him know we're struggling, hole up at home -I call it hard hat and flak jacket time- and wait it out!

Coo's neurologist, Dr Tyagi's great! We've known him for ten years, he's patient and kind and really listens to him, he's an all around great guy! He sorts an emergency appointment and between us we sort out a plan of action and begin to move on!
Shingles...
Blood results are better this week so panic over you'd think? NO!
I got poorly with the shingles! What the heck!?! I'm seldom proper ill! I think it was probably stress related and a mixture of everything going on. Thankfully I'm on the mend now and Coo's doing better too so result...woo hoo!

That circle of support is so important for Carers especially when they are poorly!
We're lucky the SDS (Self Directed Support) care package, kicked in seamlessly and Looby - (our PA) came to stay for an extra few nights until I felt a bit better and we all lived to tell the tale! lol

I think that's really the difference it makes when Health & Social Care get it right! Carers have some much needed help and feel supported, they recover quicker and are able to cope with the situation and from an economic point of view, costly hospital admissions are avoided too as with proper support it's all managed that much easier at home!
**It would have been so much more difficult coping without it that's for sure!**

I'm hoping for a more restful time...a few weeks stress free would be nice for us all though wouldn't it!
Stay strong
((hugs))
Maz x

Carers, Flu jabs and the Neuro too...

Hi guys, How have things been this week?
Well, Coo was doing ok!
His temperature stayed down and despite a wee sniffle he felt on the up so...

This week, we did in fact get our flu-jabs done! While this usually means a few days at home and an increase in seizures for Coo, it also means we can hopefully, avoid nastier complications further down the line! For him, Flu usually means a major crisis and a prolonged admission to hospital.
In our case flu jabs are not an option...they're a must!

It's been all go here, we had a visit to Coo's Neurologist this week too! He's a real nice guy and always listens so Coo feels comfortable raising any issues with him.
Anyways, we've been concerned over the last few months as Coo's had a lot of muscle and joint pain. He has pain due to all the limb jerking during seizures...fair enough and he uses a muscular pain relief but he's been in a lot of pain lately so he decided to speak to the Neuro, just see what his thoughts, (if any) were, on the subject. Turns out he had a lot of thoughts and all drug related!

Long term drug therapy, especially poly-therapy, is not much good for anyone really and Coo's been on AED's (Anti Epilepsy Drugs), for over thirty years. It seems, amongst the many side effects of his meds are Osteoporosis and bone density problems! This may well be contributing to his current pain levels so I guess we have, yet something else, that now needs checking - with a bit of luck it'll only need a blood test!

I often quote...

Carers...
'We are all in the same boat so we each must take turns to paddle!' 

I'm paddling hard for the moment but it's sure nice when someone else lends a hand at the oars!

Stay strong and keep paddling your boat!
(((hugs)))
Maz x

Hoping for more settled times...

Hi guys, it's been a bit of a struggle again here this week.

I've had to dig out my hard hat and flak jacket again as Coo is poorly! His meds change of a few months ago, has caused some on-going problems and he's struggling so very hard this week.

Coo's core drug Epanutin was discontinued earlier this year and after a trying time, phonecalls back and forth to both Epilepsy Scotland and our Doctor and Coo's Neurologist, we discovered the drug was being made by another company and under a different name - grey area if you ask me! Anyhow, we chased it down and moved on but Coo's struggled more than usual over the last few months and he is convinced it's down to a change in the drug manufacturing process!
Now, I'm not so sure, we've had a lot on our plate recently with baby Jessie's Hip Dysplasia and surgeries and Coo's been so stressed too so all that could be impacting on, what is, a very precariously balanced seizure struggle at best but on the other hand, who really knows? He might be right! All I know is, it sure has been a struggle - that's for sure!

What to do?

Well, firstly we need more blood work done, just to see exactly where those drug levels are sitting on the safe range and then we will see.

Our GP thinks the additional seizure activity is probably due to stress and it may well be but one things for sure, with Coo struggling as he is currently, we need some questions answered. The Neuro is probably best placed to answer them so I've a feeling another hospital run is on the cards for Coo and I.

I'll hope for more settled times for us all and I'll keep you posted!
(((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

Another Neuro visit...

Hi guys, we've been at the hospital again...

A visit to Coo's Neurologist was on the cards this week.
He's a nice guy and tries to keep an eye on things with Coo and I and we're both glad to have him!
Although there's not much left for now to help with Coo's seizure activity, it's good to keep in touch with a specialist every so often and we learned this the hard way!  
Coo had major problems a few years ago and it took forever, (well it felt like forever!), around six months actually, to find a neuro to try and help... it was a very scary time for us both!

Anyways, there's nothing new to try drug-wise for Coo but non-the-less, it was a good visit.
Coo's neuro. listens and that's important! It's soul destroying to have a feeling of everything being so out of your control and at times, that's how it is for Coo. It's good he has someone who doesn't push too hard and is willing to progress things at Coo's pace, when he feels ready.

This time we've decided to wait until the spring, when there's less chance of colds and infections and then try to increase one of the AED's (anti-epilepsy drugs). It may help a little but as it's really cold here and already the time of year where Coo struggles most with increased seizure activity and infections, he wants to wait until spring and give things a better chance!
Even a little improvement would be great!

We're doing ok, the bloods came back and yet again the white cells are low so we're avoiding busy, public places and those dreaded coughs and sneezes!
I hope we get a dry day and can maybe get out on our bikes again - that would be nice!

I hope you're doing ok where you are too!
(((hugs)))
Maz x

Define normal challenge...

Hi Guys, I came across this and thought it was a good idea.
It's a define normal blog challenge!

Well, what do you think? Sometimes, I tend to forget, what we perceive as normal, other people from what's considered normal families are kinda shocked by!

This week, well to start with, Coo's speech was a little slurred and he felt poorly so...

Appointment  #1 was on the cards -

More blood tests to check AED (Epilepsy drug levels), were ok and white cells too, just in case he'd picked up an infection...again!

Appointment #2  - That was for the results and to get the drug doses adjusted as he did have an infection!

Appointment #3 - Well, that was the most concerning one as it was with the Neurologist. It seems we're at the end of the road with drug therapies, there's little improvement in seizure activity levels and while that's bad enough, the main issue was the fact, our Neuro calmly dropped into the consultation, the fact Coo is now a high risk for a SUDEP, a sudden unexplained death in Epilepsy - well...okay.

Of course we accept this and take it in our stride - we've always known there was a risk and that's normal for our family. Just another ordinary week but while it's ordinary for us, it's not so for the other people around us and that's the bit you sometimes forget about isn't it!

People were genuinely shocked by this latest turn of events and when I think about it so should we have been - shouldn't we?
On reflection, I think it's part of our coping strategies, you just kinda accept what is said, take it on board and carry on regardless don't you!

I wonder what kind of 'normal' week the other bloggers have had - I guess we'll see, won't we!

(((hugs)))

Maz x

Carer, Coo and Hospital too...

Hi guys, it's been another difficult week I'm afraid!
When are we gonna catch a lucky break!

Still saddened by our wee dog leaving us last week and a seizure increase as Coo's been struggling, we set off to an appointment with Coo's Neuro.He's a really nice guy, he's always friendly and treats Coo kindly  so...what was the problem?

Well, it seems, we've reached the end of the road with AED's (anti-epilepsy drugs) yet again and while it's not a new area for us - we were at this point many years ago - it's still a blow.
So what do you do now?
Well, you just manage, kinda carry on regardless and hope some new meds come on the scene.

I think, if I'm honest, we both thought this was coming as when Coo re-entered the system six years ago there were four new drugs on the market and he's tried them all so it shouldn't have been too much of a surprise - should it?
I think, maybe, you always hope there's something else to try and who knows maybe in a few years, something new will pop out of the wood-work!

The meds aside, what I did find difficult, was the Neuro discussing SUDEP -  it's when a sudden unexplained death happens in Epilpesy.
Now, don't get me wrong, we both know Coo's at risk from lots of problems - his horrible time with Aspiration Pneumonia, left us with no illussions on how quickly things can deteriorate. We tend not to think about this side of things, I guess it's a coping mechanism especially when things are tough.

  

I think the Neuro. brought home, just how tenuous things really are and I suppose while we were still trying out other meds, the issue of a SUDEP didn't really need to be raised and now we're at the end of the road again, well, I guess it had to be discussed.

Coo didn't even aknowledge the situation at all!
He just let it slide!
Although, we did discuss it over a cuppa later that day and we've both decided...

 If, and I mean if, the worst were to happen, well, we've no regrets, we've had a good life together and lot's of love both between and all around us - so in the full scheme of things, we're lucky aren't we!

So...I'm ending today with some sunnier thoughts...
We've decided. We 're not going to dwell on things.
If new drugs come, then fine and if not? Well, we'll do what we always do...keep on going together, what else! lol

We're doing ok and I hope you are too!
(((hugs)))
Maz x

Hospital 'n' rainy days...

Hi guys!
I guess the rainy days are back again - it's been blowing a hoolie here and lashing with rain!

My wee plants are still safely tucked up in the greenhouse and it's well into June now.
What a month - we've had all the seasons! lol


Coo's been at hospital again to see the Neuro and things have kinda gone as we thought. They're not going to do anything more for the time being.

It seems the AED's (anti Epilepsy drugs), he's on just now are as effective as they're going to be and any more increases will not really help - already been tried!
I guess he's stuck on around 10 - 15 seizures a day and that may sound a lot but it's been worse...a lot worse! Three years ago, after a nasty run-in with pneumonia, it was upto thirty seizures every day for months on end so on balance... we're kinda ok with things - well, we can manage put it that way! lol

I think so long as we take time out when we need to and stay home when we can, things will be ok!
I'm glad we've got the wee greenie and my array of fruits and veggies on the go too as it keeps me busy and even Coo's began to take a bit of an interest - woo hoo!

Who knows, maybe even the sun will come back for a visit!
Let's hope so and if not...?
...let's keep those sunshiney thoughts for warmth! LOL

Meanwhile try this wee kitten smile for size...

Works for me! LOL
(((Hugs)))
Maz x

The N.H.S. and the supported Carer...

Hi Guys - there's been a bit of movement on this!
The N.H.S. has come good and thankfully, I'm not so unsupported after all!

Turns out our GP was as hopping mad as we were!
He says, he didn't refused to prescibe the drug at all!
He asked the neuro on several occasions, to clarify who would do the monitoring as here the guidelines say, an E specialist is to monitor closely within the first 3 months.

Anyways, the long and the short of it is...the neuro has decided to relent and reinstate him back to his clinic! In the end I think even he's realised this whole situation was not handled well!

Our GP will now prescribe the drug as the ESN (Epilepsy specialist nurse) has agreed to the do the monitoring - which was all our doctor asked for in the first place!


Now couldn't they just have played nicely in the first place?

I'm just glad this resolved so quickly as from past experience, it's very stressful dealing with NHS issues - it kinda grinds you down. Thank God for the E nurse - she's the best and thank God too it's been sorted!


So...just like this wee kitten...
it's big smiles all around! LOL



Let's hope the new drug helps - even a little would be good!
(((hugs)))
maz x

N.H.S.and the unsupported Carer...

Hi Guys, I think it really is hard hat and flak jacket time here.

Things have taken a tumble and the N.H.S. is to blame for all the stress I'm under at the minute!

A quick re-cap of the story so far...

Coo's Neuro is a real nice guy...usually!
We've never had any problems and felt sure we could trust him in giving Coo the best care possible and we've never had anything shake this belief and trust...until now that is!
In August, the neuro wanted to have Coo try out a new drug and we agreed as at this point, still with 10 - 15 seizures every day, we thought, almost anything was worth a try.
Anyways, we agreed but our GP and he's a good, caring and trusted, family doctor, did not want to prescribe the new drug as it needed to be closely monitored.
So...we've been waiting around for almost four months trying to sort out who would be responsible and who would prescribe this drug that may or may not help Coo!

Now hold onto your hat for this one...It's been decided...nobody will prescribe!
We've had a very curt 3 line letter saying as the GP won't prescribe this drug the neuro will no longer see Coo and he's been discharged from the Epilepsy clinic!
Now correct me if I'm wrong but isn't the health service there to support people with severe disablilties and their Carers? people just like Coo and I who are struggling daily to cope with major disabilty and health problems?
Well, I thought so too but it looks like, when you scratch the surface, things are not so cut and dried.

I'm hopping mad and fit to be tied!

I immediately contacted the neuro's secretary, who has only ever been a very nice, helpful person before, to raised my concerns.
I told her, I do not agree, Coo is well enough to be discharged from the care of a neurologist given the problems and difficulties living and coping with such a high level of seizures. I mean, it's only a few weeks ago the out of hours medical services here, contacted us to say Coo's latest blood test had registered overdose levels, was toxic and needed to be reduced immediately.
Now, does that sound stable to you? Me neither!

I only hope the Neuro decides bearing in mind, both Coo's health and my objections, to reverse his decision and continue to at least try and help Coo.

Neither of us ever want to be in the position we found ourselves three years ago. Coo hit a major crisis point, with thirty seizures a day, was not under the care of a Neuro and it took almost six months to access the system and get some help.

It's a time neither of us will ever forget and probably the darkest time we've ever had. We felt so powerless and bereft and hell will freeze over before we find ourselves left in so un-supported a postion again!

I've dug out my hard hat but I really hope this resolves before things turn ugly!

I hope you're experiencing a more settled time where you are!
(((hugs)))
maz x

Raggedy edged Carers...

Hi guys!
The dumpling tasted lovely!
Coo wasn't too keen but he's not really a 'cake' person so I wasn't offended - all the more for me! LOL

Being a Carer is never what you'd call easy. I think, sometimes it kinda feels like you just lurch from one crisis to another and this week has been one of those weeks!

It's been a bit of a struggle with Coo.
He's had lots of seizures this week so we're both feeling a bit raggedy around the edges! LOL


We're having some problems getting coo's new meds and that's added to the stress. It's turned into a bit of a saga...the Neurologist decided he'd like Coo to try another new drug and things seemed to be going along fine, well that was until our GP decided he didn't want to prescribe the drug! We're still sitting in limbo while they mull over who's responsible for prescribing and monitoring new drugs!

I can see why there's a bit of an issue, it is a new drug but it seems nobody wants to take any responsibility. Meanwhile Coo and I are waiting around and things aren't getting any better!

Hopefully, they will work it out sooner rather than later and then, we can at least try the drug in question and find out if indeed it'll help Coo.
What a medical mess - I hope they sort it out soon!

I suddenly remembered an old lady I used to visit who always said 'it's a great life if you don't weary' and she's right! So...here's hoping we all don't weary! LOL

(((hugs)))
maz x

That Carer roller-coaster ride...

Hi Guys, yet again we're on that roller coaster ride!
Coo's meds have been problematic this week and we're struggling, so it's hard hat and flap jacket time yet again!

Coo's Neuro told him to stop one of the AED's (anti Epilepsy Drugs) last month as there was not enough improvement to continue so he's been slowly dumping it since then. This week things have kicked in with a vengeance and poor Coo's suffering big time, during seizures, he's bitten his cheek, his tongue and now he's taken a bite out of his lip and can't eat.

I've phoned his Epilepsy nurse for some advice but meantime Coo's decided to up one of his other meds in the hope things will settle. He says he feels like he usually does when his meds are too low so maybe this is the answer...

I sure hope so! We could both do with a break and some sleep!


I'll be glad when Looby comes to stay tomorrow night as least I'll sleep and Coo? well, we'll just need to wait and see and keep an eye out for those toxic signs!

I sure hope things settle soon even a little bit would do!
(((hugs)))
maz x

It's raining in Carer land...

Hi guys!
Well, the rain has still not stopped here at all!
In fact here's our local train station: You can kinda see why they suspended services can't you! LOL

We are used to wet weather but the sky is so heavy and grey it's having a knock on effect on everyone's moods!

Coo's been very down, his seizure pattern has not improved even though we reduced his meds. He's having his blood's re-tested tomorrow so we'll speak to our Doctor then.
I have to say, there is a new pattern emerging, thank God we keep a detailed seizure diary as these things can be spotted fairly quickly.

It used to only be when Coo's AED (anti-epilepsy drug) levels were too high, that his mood swings kicked in but now I think this is happening when they're too low as well!
The last time we were in to see the Doctor, he said a lot of people were having low mood issues mostly due to all the dull days and change of seasons but I'm pretty sure Coo's are related to his drug levels too.

I'm definately going to explore this further either with our doctor or his Neuro.

Apart from the usual hassles increased seizures bring and the current flippy mood changes - everything else is well...hunkydory! LOL

Rainy weather?

All you need is...

A great BIG brolly and an even bigger smile!

Just as well I kinda like the rain 'aint it!

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

The Neuro and the drug see-saw...

That dreaded drug see-saw I've mentioned before has just got a little bit more complicated!
I think it could be hard hat and flap-jacket time yet again...

Coo's meds are a fine balancing act, too much in the blood stream and it's toxic - too little and it's seizure city - the up-n-down see-saw effect!

He saw his Neurologist today and firstly I must say; he's a real nice guy, always takes time to speak to Coo and explain the options - little as they are!

It looks like he's going to add in yet another anti-convulsant to the mix, making a cocktail of 3 AED's now(Anti Epilepsy Drugs).
I've been on the National Epilepsy website for some info. on the new drug - zonegran.

Yet again the side effects are a bit of a scare but we'll not worry about that just yet - he surely can't be that unlucky again as introducing Keppra was a nightmare!

Coo's neuro says it's worth a try as his seizure level is still way too high.
We last added a new drug a year ago and it's not really dented things - he still has between 250 and 300 seizures a month.

God, when you write it down is sounds such a lot!
Nobody ever said the life of a Carer is easy but I think Coo's got the fuzzy end of the lollypop!
We'll begin the new drug on Sunday and just see where it takes us!

Positive vibes, and...

Lucky white heather at the ready!

Love,
maz x

Drug see-saw again...

Hi everyone, after all the issues and difficulties adding this drug into Coo's system, it looks like it's gonna have to come right back out again!

Coo's blood results, show a further hike and there's now no way to control the level of the different drugs in his blood-stream.

Too little he seizes into oblivion all day, everyday, and too much well...ditto.
That's the dreaded drug see-saw effect!

He did avoid some of the nasty side effects but a month into the trial, he's suffering severe Flu symptoms, chills, cough, the works and continual nausea, his appetite is nil so he won't eat anything much and to cap it all he has now developed depression!

We're waiting for a specialist nurse to contact us tomorrow but Coo feels his quality of life has diminished so much, that any gains are far out-weighed by unbearable side effects.
Coo says the feelings of desperation, sadness and lethargy are as awful as when he had pneumonia and was struggling with 30 seizures a day!

It's been a very stressful experience but we had to try as it's a new drug and gave us just a little bit of hope!

Gosh it's never easy is it?

Don't you sometimes feel, everything comes at a price or is that just a tad cynical?

Let's hope for better times.

Take care friends,

maz x

A new medicine...

Hi all, we same Coo's Neurologist today and he's asked him to think about trying a new drug, only problem is it's got some real nasty side-effects.
psychosis, nausea, anxiety & aggresion to name a few!

I've said to Coo it must be his decision but I confess, I'm feeling very wary.

Each time Coo's added another AED (anti epilepsy drug), we've had 2 or 3 months of hell while his body adjusts to it, then major side effects for a few months with no real improvements finished off with a further 2 or 3 months of hell to wean back off!

I'm trying to be positive but I'm not at all looking forward to the coming months ahead.




I hope things are in a sunnier place where you are and I hope too for sunnier days soon.



Who know's maybe this will be the one!

maz x

Back on the see-saw...

We're struggling a bit this week.

Coo's A.E.D.'s (Anti Epilepsy Drugs) have gone toxic....again.
The dreaded see-saw effect.
This means there's too much drug in his blood stream and he needs to reduce his meds again.
We're both shattered as Coo's had an increase of seizures over the last few nights.
I only hope things can settle down as we don't see the Neuro again for another 6 months.

Hopefully things will be more positive next time.

maz x