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 :)