Epilepsy Awareness

EPILEPSY AWARENESS MONTH

Yes my friends, it's here again. Time for everyone affected by Epilepsy to turn Purple.
It's out of a mark of respect. It's to remember those who've been lost to it. It's to teach people what it is and how it blights our lives. It's about knowing the facts and taking time out to tip your hat to the strength it takes just to out one foot in front of the other some days.

Zak has Epilepsy. It comes top of the "things that scare us" list.
He has LENNOX GASTAUT SYNDROME which is diagnosed by how it presents both clinically and on EEG. There is a specific EEG pattern. A slow spike and wave is seen. It also shows that Zak is having continual clinical and sub clinical seizures, of varying type, which are resistant to medication.
Physically, LGS means that Zaks development is regressed. At the ripe old age of 7 and a half, he functions at a level similar to that of a new born.

Zaks current favourite seizure type is a bit of an odd one. We find it very difficult to pin point the actual terminology of each of his seizures, so for now, we'll call this one the "pokey eye out one". It is most definitely TONIC in nature, as it involves a period of intense stiffening of his body, mainly his arms, which will simultaneously rise, bent at the elbow, making a bee line for his eyes/face. He has caused himself so many facial injuries but scratching, punching and poking his eyes, it's unreal.

His other seizure types are generally tonic, but he also has some Absence seizures, some are clonic and some we really just have no idea where to start pinning labels to.

What we do know is that 11 Anti-epileptic drugs down the line, and we're yet to find anything that makes even the slightest difference.

I couldn't possibly talk on here about November being Epilepsy Awareness month, without telling you that NOVEMBER is also DIABETES AWARENESS MONTH.

Part of the reason I have been so behind on keeping up with Zaks blog is that in November 2013, his beautiful big Sister, Ashleigh, was diagnosed with Type 1 Diabetes.
On the very day we were supposed to be going on a LONG awaited family holiday to Disneyland, Ashleigh took seriously ill. The GP told us she just had a tummy bug, when infact she was seriously close to slipping away from us.
The ambulance was called at 7 in the morning, after we discovered Ashleigh could not lift her head from her pillow. She'd lost what looked like all of her body weight over night, and her breathing was hard and fast. She looked skeletal. I've rarely been so terrified on my life, and believe me I've seen some scary times.

The paramedics arrived, and it didn't take them long to figure out what was going on. The Paramedic in charge said there wasn't even time to go get the stretcher. He just scooped her up in his arms and carried her to the ambulance waiting outside.

Less than a mile out of our home town, they had to pull over at the side of the road to try and work on her. We were losing her.... but running out of time, they had no choice but to put on the blues and two's and rush her to hospital.

It was horrific to have to stand in the wings while Doctors and Nurses rushed around her, trying desperately to get a line into her veins. But they'd all collapsed and at one point she had 2 Doctors and a Consultant stabbing needles in every part of her fragile body.

Thank god they did, because without that, she'd not be here today.

20 Cannula attempts later, she was having fluids pushed through. She needed Potassium, and Insulin to try to bring her levels back to a healthy point. There was talk of transferring her to Manchester Children's Hospital, and ICU were on standby.

It took about 24 hours, but they finally brought her back to us.

A week in HDU, a diagnosis of TYPE 1 DIABETES, and a fast track session on how to test her blood sugar levels, and inject her own Insulin, and the rest was up to Ashleigh.

In a few days in will be exactly one year since she was diagnosed, and oh my god, I could not be more proud.
She has sat her first year of GCSE's and already has enough marks to get the place at College she wants. We even spent the night at the college of her choice, and enrolled there and then.

She now uses an Insulin pump, where instead of guessing how much Insulin she needs and injecting it 4 times a day...now, she just works out exactly how many carbs are in her food, programmes it into her pump and the pump does the rest.

It's still early days really, but already I am able to take a back seat. She does all of it herself....only ever needing a kick up the bum to get out of bed in the morning, but then, she is still 15...

                                   These two little devils make me proud every single day xx

Bumpy journeys.....

Wow, Halloween is here again. That means it has been way too long since I last updated this blog. I am terrible at keeping up with it. But as long as no-one minds a very intermittent blog, then service shall continue as normal.

Last week we had a little get together with some friends who were in the original special needs club called Koalas.
The group was set up by Mums, for Mums of children with special needs. Zak was one of the founder members.
It was amazing seeing how grown up they have all become....and so tall! even those who were very premature, tiny, little ones when I last saw them...
It was though, quite sad to see some missing children. Those we have lost along the way. But never for one second have we forgotten them. How could we... they left such an imprint on our lives, in our hearts. Gone, but definitely not forgotten xx

So, Halloween fun aside, this last few months have been a lot of hard work. So many huge decisions hung in the balance, and lots of tears, deciphering whether or not any of them were the right decision at all.

Zaks School, who have served him well for 5 years now, have kind of come to the end of their ability to give Zak the 100% he needs.
There was no doubt in my mind, what so ever, that the staff there love Zak with all their hearts. They've cared for him, and myself, for a long time, and have felt much like family. But over the last year or two, we've seen services cut, Ofsted standards slip, and some people not fulfilling their promises to Zak. We have fought to keep vital services available. Some we've won, more though, we've lost. We spent a whole year fighting to keep hold of a nursing service on site, to enable Zak to be safe in School. We won this fight, even though the nurse only returned on a part time basis, and shared between two sites. But it was a compromise, and one I could sort of live with. But as one fight came to a close, another opened, and when we were informed that the Physiotherapy in School was going to be lost, it was a fight too many, and we decided that it was time to move forward.
In all of this, our aim is to keep Zak safe, happy, healthy, and in the best position to be able to gain something, however small, from being in the School environment.
Zak didn't return to School in September. We'd made the decision to change Schools, and were committed to giving him the best of everything until things were put in place at the new School.
Bleasdale School in Silverdale....although this means a 45 minute journey to School every day....it is a School that is excelling with children, like Zak, who have PMLD. They have full time, on site, nursing staff, and from what I've seen so far, their Physiotherapy schedule is outstanding. They have on offer everything that we were fighting for over the last couple of years.

So, Zak has a place in his new School. The uniform is bought, and I will be taking him in myself for a couple of weeks, to give staff time to learn all about Zak, his likes and dislikes, and most importantly his little Zakisms that make him him.

Our hurdle now, because of course, in the world of Special needs, there is always a hurdle.... is transport. In the infinite wisdom of those in suits, they gave Zak a start date in a new School, in another county....but neglected to organise any way of him actually getting there.
The irritating thing about this, is they promised us, last time he needed transport, that they would not mess about with his providers. They'd not put his run out to tender as there was too much training needed, and we'd spent the Summer of 2012 training the ones he has, after the last time they pulled this stunt on us. Not surprising though, they we not true to their word, and it now looks like organising Zaks transport to and from School may take some time.
So currently, I have no idea when Zak will officially start School.....until then, I will take him in when I can, so he doesn't miss out. And I will home School him the remainder until that time comes.

Never a smooth ride is it.....

Halloween 2012

                                                      Happy Halloween 2012!!! xxx

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...

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?

So, a happy post....

                                                                                 

So much going on at the minute.....
   It's the Summer holiday's and we've done all sorts of lovely things. Cerebral Palsy and seizures won't hold this boy down!!
Ash has discovered a new found love of horses. It's wonderful to be able to give her something that is JUST for her. All too much of what we do revolves around Zak and his needs, so this is huge!
It stems from our annual holiday at Ribby Hall near Blackpool. There's an equestrian centre on-site, so she was riding every day! and loved it!! She's now all kitted out with jodhpurs and riding boots, and she's enrolled in the local riding School.... One very proud Mummy here!

 

Look at that smile!!

 

So, we have been on holiday, to Blackpool. We planned on doing a few of Zaks favourite things while we were there, and yes, we did manage to do them, but thanks to the addition of Topirimate (yet another drug to try and win the war on Epilepsy), Zak spent the majority of his time fast asleep, and missed it all!. He missed the Zoo, the sealife centre, the beach, the bike ride....the lot!

So, what could we do, but go to the zoo again! As the top pic shows, he managed, just, to stay awake throughout.

It was a great day, lots of fun.... even being chased by a monkey keeon on getting its little hands on Zaks medicine in his bag, didn't stop the fun.

 

 

While all this fun is being had, we have also, finally, enlisted the help of a carer.

Zak is 5 now. He's not getting any lighter, and his care needs just get more and more. I've always hated the idea of getting a carer in. It's alien to me to have someone else in my house, doing my job!

So, tentatively, we have taken the step to go for it. And we welcome S to the family.

As you can tell from the picture, she has LOTS of fun things to do, and plenty of enthusiasm!

I'm slowly getting used to the idea, although I still find it hard to step back and just let them get on with things..... but I'll get there!

I think it will be much easier when we get the house extended.... and on that matter, things are moving forward.

Now that Zaks case is settled, we finally have the means to give wee man all the things he needs to have as full a home life as possible. We are converting the garage into a downstairs bedroom/bathroom.... extending the front of the house to make space for a sensory/therapy room and larger entrance for wider access.... we're widening the doors, and most exciting of all, he is getting his very own hydrotherapy pool!! (another thing ticked off his bucket list!)

All of this is going to make such a massive difference to all our lives! Zak can have the therapies he needs, light, music, water... our carer will have room to do everything she wants without us breathing down her neck, and we can have time off! which will be lovely!

The work is due to start mid October, so watch this space for updates and pics!

 

 

Poem....every morning, by me, Mags Hall.

                                                                                

Every morning starts the same

I hold my breath until I see yours

The world stops till the moment I know

That the darkness has not stolen you

Then in a heartbeat I know all’s well

And the morning sunshine streaks across the room

Bringing life to a new day

For just a second I look at you and everything’s forgotten

As you stretch and yawn, opening your eyes from your slumber

You look like any other five year old

This moment is like heaven has allowed a glimpse of what should have been

And, a flurry of dreams go as quickly as they first appear

For inside your body, a battle is being fought

A familiar foe,

one who is so strong that defeat is inevitable

It takes every ounce of your strength to keep it at bay

And there are times it would be so easy to give in

But your enemy does not belong here!

There was no invitation!

And the strength you gain from the love of those around you

Is all you need to hold it back!

So you fight!

And each new day is a blessing

Another win in the battle that is your life

We celebrate and ensure your days are filled

With happiness and memories we can hold in our hearts for an eternity

You show us that the things that are important are of no monetary  value

But of love, devotion, hope, hard work and rewards of the heart

As the day nears its end we reflect on new memories made

We smile and hold you close

Loving this moment, but knowing all the time your enemy is ever present

As the the lights are dimmed, and stories read

I hold your hand as you drift off with your dreams

But every night starts the same

With a prayer that we get to fight another day