It's been a while...

It's been a while since my last post, and an emotional roller coaster once more on medicine changes. The stiripentol just wasn't working but as usual the doses were pushed to limits and we lost Toby deeper and deeper to drugs.
I curse myself for falling into the trap of putting my hope in a medicine, its hard not to when after 14 months its all you feel you have.
The doctors and lets not forget the experts in neurology often highlight that it takes time to find 'the right dose' or that every child's epilepsy malfunction is different so it can take time. Every thing seems to take time so when do you stop looking for a cure? The answer, we found, is when our time with our son was dogmatic, stressful, draining and exhausting as the quest to find seizure freedom actually lured us into a world where we forgot the finer things, the few words our son was saying, his quirky ways, gestures and big big smiles...... As the doses got higher, the finer things got clouded and things were actually getting WORSE!

Toby still has no cause for his seizures, and he is to have further genetics testing, but we are still even more convinced his streptococcus infection in 2011 brought this on.

It wasn't until we weaned Toby from the Stiripentol, and reduced the highly dosed Clonazepam that our son came, back, giggling, talking (words he already knew) but clearer! two words together again "hiya Daddy" "Hiya Deesy"
Toby's posture and balance improved and he learnt to climb his climbing cube, and go down the slide, Toby now climbs on everything! :) keen to explore, intrigued by cause and effect toys again and most of all ...........less seizures! yes they were still lots daily but they were more controlled....... we introduced Topiramate........ things were going fab.......until......... and dose increase too many and seizures were taking a turn for the worse again......Dr Newton ........agreed to return to the dose he was at when things were good............ i shall write about it in my next post......:)

Today my big brother Colin and his friends cycled a 52 mile circuit around Manchester City Centre to raise money and awareness for Toby and millions of others in search of a better life with epilepsy. Words cannot express the gratitude or sentimental feelings that I hold at this moment in time. For those who were involved ALOT of blood sweat and tears was put into training for Colin, I know it was so much more.... he completed the race in his best time, he remained focused, disciplined and committed since the day he announced his involvement and I know, for him it was ALL about Toby, and what he has done will never be forgotten.......

The seizures continue...

Today I am blogging with sad news as Toby's seizure improvement has rapidly regressed. Two weeks ago we saw a return in myoclonic clusters which has resulted in an increase of stimulus induced drop seizures and head nods.

As a family we are trying to continue as 'normal' life as we can - Toby is still developing slowly despite the debilitating consequences of his seizures. As a mummy I feel cruel that I cannot confidently pursue his learning desires..... I simply cannot keep him safe ! He has to spend a lot of time in a wooden play pen as he will hurt his head every couple of minutes if left.

We contacte the Neuro who is changing Toby's Clobazam to Clonazepam - I have heard mixed stories about this drug. As always we remain hopeful as without hope we could not be the strong family that we are today, to see your child go through pain this many times a day is truly heartbreaking and indeed frustrating.

We went to the beach yesterday the sun was glorious and Toby loved the freedom of open space, the day before he spent hours in the paddling pool.... it makes me happy to see him giggling and free.

However these opportunities are just hours of the long days which we battle to keep Toby safe...... its hard to not talk about what we endure but at the same time it gets boring saying the same things to people who ask about Toby..... most of the time we just answer with 'so so' or 'it's not great.....but you've just got to get on with it....' a statement which holds so much truth but which also carries so much irony... we cannot get on with anything.....our life at the moment s on hold..... plans are made around Toby's ability to cope or in fact our ability to cope with Toby safely yet to give him the best play times........ his favourite game at the moment is climbing the stairs and then negotiating a way back down, I taught him to shuffle down on his bottom to which he expressed his sheer delight with a squeal and a belly laugh every time he 'bumped' on his bottom! Toby will have at least for drop seizures doing this activity alone so I am one step behind him all the way.

I try to only put him in the pen when I have to - to do things like top cleaning or preparing meals for him and his gorgeous sister Hallie. I'm sure mothers will empathise that these duties take up a lot of time and my house is never immaculate as I try to spread my time fairly between living and playing with Toby and Hallie. Toby doesn't go down to sleep properly until 9pm at the moment and he is up at 5am so my time ourselves is limited often i fall into bed.....dreading the same routine that follows....yet cherishing being with my kids.

Fortunately for every sad or bad thing we never lose sight of reality and no matter how bad it is someone is always less fortunate in some other way and we have so much to be thankful for. Toby is an angel representing those who suffer with epilepsy, he will make a difference for others in some way and I will continue to share his story with those who want to.

I hope to blog soon with better news...............x

Update......

For those of you following my blogs I am sorry its been a while, unfortunately the reason behind my lack of communication is Toby's deterioration....... Having not been able to get rif of the last few blinks that were hindering they have in fact got worse, more myoclonic activity meaning he is forced forwards and consequently injuring himself .... I think Toby bumps himself more in a week than Hallie has in a lifetime (she's 7 this year and has had a few bumps herself!).
The Doctors doubled Tobys Epilim dose at night and want to double it again in the morning if no improvement........ I gave it a week and Toby just seems to be getting worse not better.
I hate that my word is not good enough, the thing about NHS care is budgets, timescales and statistics. The Dr's have to follow so many protocols before they try new things....... it took toby a year to get to stiripentol as its cost nhs £6000 a year to buy. Epilim has never shown to do much for Toby so why he's still on it I don't know!
So currently I feel deflated as we had come so close to 'normality', I also feel Isolated as even the professionals have cut me loose..... we see Dr Newton a week today and so here is hoping that he has some sort of plan.........
In an attempt to keep the blogs fairly positive i'm going to sign off  now but I will keep you posted on Toby's progress.
Emma

Peaks and troughs

Today has been one of those days.. Toby has had an ok day in terms of seizures but not as good as last week. I am blogging today because I don't feel particularly strong about life. Usually I have a good cry at the end of the day a hope that the next day I'm stronger. It's on days like these I don't turn to family or friends as I don't really know what it is I seek from them. The reality of my life usually triggers off thoughts of the future and that is what's been whirring round in my head today, sad thoughts, unanswerable questions and worry. When I see Toby physically he's not the boy Im familiar with the steroids although have stopped have left Toby so much bigger it's not a problem and I'm in no way ashamed or embarrassed by Toby I'm just somewhat frustrated as I've been to four or five shops to buy him some smart trousers to go to his cousins birthday. All of the trousers I'm buying are aged 2-3 and barely fit his thighs he cannot bend or climb and is even more inhibited than usual consequently affecting his development. That's a small thing you may think but added to other small things it builds up. I'm so physically tired as to keep toby Safe and help him get about I have to carry him by 4 o clock a journey up the stairs seems like climbing Everest with Toby on my hip, on days like these I wonder when he'll be able to do these things if ever? Is hypotonia going to stay with him because of his seizures in the past? I then wonder if so what will his future hold? So you see our daily lives aren't just controlled by seizures but by the missing blanks and uncertainty of basic future planning. Most days I'm happy to take each day, enjoy the good and cope with the bad but on days like today it feels impossible. It makes me sad, then I feel guilt for sometimes wanting to get off this bus ride at the next stop, that feeling doesn't come often but it does come, it doesn't last long but it's there. I usually have thoughts interrupted by Toby or Hallie and I realise that if I give up, if I fall apart then so will my whole family that cannot and will not happen, and in my heart I know I'll get through it even if my heads having a blip! So having shared these feelings I hope for those who feel similar I've helped. Let's see what tomorrow brings..... Xxx

Is this the magic potion?

We are into week 3 on stiripentol and following the introduction of the clobazam there is not doubt in my mind that Toby's myoclonic seizures are improving... The benefits of the spasms being in remission are evident in Toby's development as he finds the time to play with toys and explore in his own little way. Toby has learnt so many things this week alone however the myoclonic seizures have made him so limited in his play, by this I mean that actions and sounds could and are triggering off a seizure, this still results in him hurting himself badly as he falls forwards.
It would appear that stiripentol speeds things up and clobazam sedates.... In a round about way ( without the science ) the theory then is that the 'magic dose' is finding a happy medium I hope we are nearly there!
Toby is becoming adventurous, cheeky, he's speaking and babbling and even put a shape into the shape sorter this morning ! I couldn't believe it considering a couple of weeks ago Toby was still learning by putting every object in his mouth as a baby would, although he still does this the main thing is he's progressing. At my sisters this week he has climbed onto a bounce and spin zebra and even climbed onto hallies desk ! My happiness cannot be put into words although it's laced with caution as I will always expect seizures to return due to what we have been through !
I could not imagine going through this alone and I am so grateful to my family and friends for supporting us at this time, even with support it's hard my heart goes out to all that maybe dealing with similar journey please contact me if you want to talk about anything !
The hardest thing I think has been explaining to other people the severity of Tobys condition whilst staying strong! When I lose it others don't know what to do and for some ignorance is bliss!
My brother is now on a vigorous training regime to do the great Manchester cycle to raise awareness www.justgiving.com/manchester52 so proud, my sister has had Toby for me despite having 3 children of her own, and I know he feels safe there. Uncle paddy has tried to convert toby to united and auntie em has been my emotional text support amongst other things (exercise partner)! My Mum and dad have exceeded expectations as parents and truly would do anything for us but my biggest praise and pride goes out to Hallie our 6 year old daughter (who I hope reads this one day) Hallie is the best big sister and daughter in the world her maturity and bravery has shone throughout this whole ordeal which is far from over. She's not jealous, or embarrassed, she loves, nurtures and plays with Toby and has truly been my rock and has forced me into keeping perspective of the situation regardless of Toby's needs she needs me too I love you Hallie xx I have not yet mentioned Mark my husband of course he has played an important role in all of this ordeal..... but he has also needed support as I have, I have decided to write a separate mention to Mark on a post of his own as I have a feeling it may be long .... Love you Mark xxx

The living nightmare at its peak

So I'm pumping Tobys body with 400 mg of epilim 1200mg Vigabatrin 20mg prednisolone tablets and now 200 mg of stiripentol DAILY ! Although spasms are still at bay the horrific myoclonus is back Having more than 50 jackknife seizures a day I can't so much as cough without Toby falling forwards and smashing his head or biting his lip or his tongue ! He won't keep his hat on he's desperate to play and every sound / movement is causing such pain and disruption!
Mark and I spent one morning crying intermittently as we watched our boy sat in a padded travel cot crying and having seizures ... Unable to do any more than what we had we waited anxiously for consultant to call .... He did and he has prescribed clobazam - sedative type drug - apparently it works well with stiripentol - we shall see !
I'm utterly devastated at this point that it has come to this ? More waiting logging phone calls explanations unanswered questions my next blog will update you on this 'magic potion'
Bye for now xxxx

Weaning from the steroid so far....

In case you are unaware Toby has so far only ever responded to steroids in the 10 months he has been having seizures. Even when on extremely high doses Toby has never had one day without a seizure of some kind and his best day has still incorporated at least 10 seizures. The ACTH has successfully stopped the spasms which I have shown on YouTube this is fabulous news in that these awful type are the ones which delete all the knowledge that toby takes in and therefore make hin lose vital learning skills. However steroids suppress the immune system have made him gain 2.5 kgs in a matter of weeks and have made food his only waking interest he had to come off slowly..... February saw Toby graduallly reduce his medications and start a new cocktail.... The first week was amazing Toby's attention came back new words appeared and he has a new lease of life! Still having the odd myoclonic seizure Toby without doubt at his best in a while..... Week 2 and three became a different story, a living hell for all involved most of all my boy Toby ......

My epilepsy this year 2012

Firstly let me apologise for my out of date posts, the truth is that so many changes have taken place in Toby's condition. Since starting the Vigabatrin we have seen improvements in Toby's spasms as they reduced to blinks, however his myoclonic encephalopathy continued and presented in a fierce nature. Tobys consultant decided to change his steroid to a natural hormone steroid injection called ACTH an intramuscular injection every other day for 4 weeks :-/
Toby responded well through January however his weight naturally rocketed and he became very vacant towards the end,.8 weeks of steroid had taken its toll but dione a very important thing ..... Stopped Tobys epileptic spasms ! The myoclonic type seizures had been reduced to blinks and for three weeks I managed to do some fairly 'normal ' Activities :)
Is this it? Are we a step closer to stopping these awful seizures ? The next step is the weaning process .... We will soon know if the ACTH has worked .... Keep you posted :)