Light at the end of a very long,dark tunnel?

I couldn't believe my last post was February, my apologies to anyone who has been waiting for my next blog, if you have a child with a similar story I know you will understand how things seem to peak and trough....
Toby was so very nearly off clonazepam when we hit breakthrough seizures in April... This was difficult to to live through as it felt like we had been put right back at the beginning again. However it only took a couple of weeks to get back on track as we kept Toby on just a small dose of clonazepam .5 mg to be precise. Although I was hoping for a drug free journey for Toby I realise that if he needs them to get where we want then its justified, and I was apprehensive about the withdrawals from this drug also....
The plan now is to slowly take away his topiramate and we are half way through that, if we run into trouble a new one will be trialled .... Again I'm apprehensive but I also feel I have the strength and the power to say no, I know if a drug is going to work or not as I am so in tune with Toby and although he is not seizure free yet he is as close to it as we have ever been. He is at his worse in the morning having a few tonic seizures upon waking, throughout the day with high ketones his drops present in the form of a small nod and his concentration is so much better as he will play with his toys for ages, claps when he gets something right and is starting to become more vocal. Toby understands so much more, as Jo told me how he had been in music at nursery I said to him " have you been clever boy?" I
Did not expect hi to answer "yeah" whilst clapping his hands! Fantastic!
Life is still hard with Toby as it only takes one drop seizure for him to break a bone or fall funny, but we are dealing with each day, I'm loving work and the 'normality' it has brought back to our family, I have noticed even Hallie is becoming more confident again as her family is clearly becoming stronger what a journey she has been through in all of this she is a priceless treasure, a beautiful person and I'm so utterly proud to have her as my daughter..... ❤❤❤❤❤❤❤❤

It's been a while....

hello to all my fellow followers..... I am so so sorry I haven't updated in a while the truth is we have had a rollercoster journey and I would have been writing some spectacular things and some really sad things.

Toby has had some very upsetting moments but he has also had some great days. Having been to the consultant we are finally weaning medicines and to say i'm scared is an understatement....
As we say goodbye to Clonazapam over these next few weeks I will be on tender hooks looking for changes in behaviour and seizure activity.

The first few days of weaning we noticed no change however a week later he hit some rocky moments, i now realise it was actualy low ketones due to illness that was causing the change.

I'm writing about Toby as I see him now, bright, happy and content a truly beautiful boy ! seizure activity is at it's lowest and we are still tweaking the diet, for anyone starting the diet I would have to say please have patience... something which I have little of when it comes to my desire for seizure relief!

Toby now has a wonderful nanny, Jo who he calls Doo and he transforms when she is around as he thrives from the stimulation and fresh energy that she brings to our house. I am back at work and I have to say I love it, i am tired but with spring around the corner i come home smiling and satisfied all round......

Just been to the Dr's and been told Toby has a throat and ear infection which is a shock to me because he has been really good considering, which again highlights the benefits of this diet. If this had happened a few weeks ago entertaining Toby safely would be very difficult for me as his seizures are worse and he is very unsettled. Toby still has better afternoons, he is so funny when he's on form we played hide and seek the other night and he was giggling so much I could not stop grinning.

So ketones are rising, and diet still going strong... I am now wondering if the reduction last week was the onset of this awful infection? Only time will tell as Toby finishes his antibiotics.

Yesterday Toby had his TEDs review which was very frustrating, six people and Toby in a room discussing their findings.... outcome is usually non productive and nothing new is gained........ It's so alarming to me that this diet is so new to many professionals, and then their ignorance to it. The fact that it's labelled a diet tends to initiate an automatic roll-eyes reaction, as if someone were trying to lose weight.

Once I start to talk about the medical process on the body and how it works for Toby most people then get it for a minute at least!

I was a born talker and I could go on and on about something forever, I realise now why maybe this was so. I will not give up on educating the uneducated of the ketogenic diet and it's benefits, and I truly hope that my voice along with others will be heard and acknowledged.

As Toby is poorly I will probably be preoccupied for the next few days but I will be back with news of his journey....... until then take care and thank you for taking the time to read and please email me if you have any questions .... I may take a day or two but I will always get back to you, :)

emburville@hotmail.com

Peaks and troughs

I have finally managed to get to the computer to blog, so much is going on in our lives at the moment as well as the Ketogenic diet.........

It was my intentions to give you a daily diary for Toby's progress but as the weeks have unfolded we have had to pay more attention to Toby's seizure activity, ketone levels and bowel movements ha ha ha

Having got off to such a positive start we hadn't prepared ourselves for the come down on a bad day and these past few days we have had a mixture of bad and good.

We still have a strong correlation of less seizures with higher ketones however Toby is having a grow, permanently hungry and so we have had to look at his meal plan to cater for this.

Since we have increased his calories we have seen a marked improvement but now still trying to get those ketones higher as at the moment they are only where they should be at bed time but i am confident this will come....

That said, Toby's seizures have reduced by more than half on a good day and they are reduced even on a bad day in addition we have a lot more good than bad days and despite this Toby is showing improvement in his concentration, language skills and his understanding day upon day and we haven't even taken the medicines away yet!

bless him he's even learnt to say I Hungry! lol 

We can enjoy Toby a lot more as he will play and interact with us for longer periods of time these days seem like a small light at the end of our everlasting dark tunnel.... the tunnel is still there but the light gets brighter each day and when we have an off day we try to remind ourselves that even daylight disappears for a few hours and it will return....

We are counting down the weeks to our medicine weaning!!!! I would bet my life that they are causing some of Toby's seizures...

My Boy has got his sparkle back! we started the day out with small a step in the wrong direction and seizures upon waking. After consulting with Vicki (dietician) we realised it was down to lower ketones and constipation! This afternoon his Ketones have risen back up he has changed and we now are completely 100% sure that the diet is having a significant impact! Our days are still up and down but we are so happy with the results in such a short space of time..... I wish he would wake as bright as he went to bed but I guess in time that will come, and some days he already does! I'm finding it really hard not to be greedy and want more from this diet... some people don't get results this soon if at all and we have got to remember it has only been one week!

The die itself is becoming easier, I've had a little break from it as I had so many snacks and meals frozen from last weekend but I now don't want my stock supply to run low so I'll be making up batches of meals later on tonight I think also I want to use my ingredients up!!!

We had a couple of blips the other day as I use empty jelly pots to mix small quantities, and because Toby can have the sugar free option we collect quite a few and if we can be bothered washing all of them we recycle them! So we were mixing up the pizza topping in a jelly pot, but we also had raspberries in another pot jelly pot ready to add cream, I weighed the cream and plopped it into the pot, gave it a mix and luckily tried a tiny bit with the tip of my tongue!.............. urgh cream and tomato garlic paste, i'd put the cream in the wrong pot! I can laugh about it now but things like that can be really deflating especially if you have only made one fresh to eat there and then........

thats all for now catch you later......x

Today is day six of the diet although it's day four of Toby's meals being completely Ketogenic. My lack of blogging has quite simply been lack of time.... i'm not going to lie, the diet has completely taken up every last bit of my time and thoughts and energy over these past few days.

The adrenaline that was pumping through my system last week has well and truly nose dived into exhaustion BUT has it been worthwhile? ...................... YES!

To be honest I could have blogged a new improvement every day so far however my mind has been making me question the miracle that I think is unfolding.......... Are you noticing more because your paying more attention? I would question myself.... are the seizures milder? is he more alert or is he simply having good days? Am I imagining it? I have taken videos, asked family and scrutinised every minute of Toby's days.... scared to share too much info incase I jinx the effects by talking about it. Any parent who has tried endless medicines will relate to that.....it's like someone is waiting for you to smile then they send another batch of seizures...

I have become too scared to believe (and I still am ) that this could be working, yet I have justified my feelings and told myself still don't expect too much, whatever the positives, THEY ARE POSITIVE...

Toby is interacting more, he is more content, his myoclonic cluster spasms have more than halved in frequency.... they are milder,  30 to 12! Then this morning no clusters, the odd startle seizure but NONE :)

Scared to put Toby for his nap I did, he needs his rest, then upon waking a few mild nods spread apart, Toby alert in between and 'not out of it' still positive signs!!!!

We have a LONG way to go, it is still early days and I will never take for granted that this can change in an instant, however for those following I will leave you with this thought..... I have never ever had as much faith and hope as I do at the moment, I am so glad that the hard work is paying off so soon.... I hope that you will continue to read to find out more good things........

Speak soon

Day Three on the diet .........

Today Toby will have his first all day where all his meals are Ketogenic. With the fabulous support from Vicki, Toby's dietician I have been able to follow her meal plans for Toby.

Toby had breakfast as usual and really enjoyed it, with regards to the diet plan we are finding breakfasts a doddle and initiating the diet this way has helped me to remember quantities and this meal is already second nature.

GOOD TIPS: Toby so far has enjoyed Ready Break his allowance is 10g and I found an old formula milk dispenser brilliant for weighing out portions. You can write on the tub and it comes off in wash!

Yesterday we made our first Keto Pizza ( see pics) Hallie helped and was absolutely brilliant at counting strawberries an raspberries into empty jelly pots (they hold 50g raspberries well), once she weighed them she chopped and labelled them with a weight ! This has made the next few puddings a lot easier!
Improving her mathematics whilst playing an important role in all of this....... This has been great for Hallie, finally she feels she is helping her brother fight the seizures.........
We made a trial pizza and both tried a little and not only did it smell divine but it tasted so nutritional and fresh, Toby enjoyed one for his tea and we stored one for Toby's lunch today his meals are all ready bar his evening meal which I am going to make batches Creamy chicken..... i will let you know how I get on.

Toby so far has adjusted well his Ketones are rising and although its a little early to tell if this is having an impact we have noticed Toby sleeping a lot deeper for longer....... (no 4am wake up call this morning!)

Toby's Cluster seizures when waking appear to be lasting 20 mins rather than 45 mins and this morning they appeared milder..... this has happened before so I can only hope that time will tell us more!

I'm hope your as excited reading this as I have been writing although I should really be meal planning :)

TIPS: Organisation, timely planning is tricky at first but the absolute key to success. If your meals are there to provide daily your work is done and day to day living is there to enjoy!

Catch you soon ........... :)

Day 1 Keto Diet :)

I sat wondering tonight how I was going to get the world to share this special day with me. It wasn't until I came to write it that realisation hit me that I created this blog for me initially and not the world. Now I use it for me and for others..... Knowledge is hope and living life with epilepsy means that you will endure peaks, troughs and pauses whilst others cruise by steadily.

 As we have taken each step in this new life coping with Toby's epilepsy I have struggled to process all my thoughts the same way. I realised that writing things down is therapeutic and has been my coping mechanism. From the very beginning I wanted to write a book entitled 'Epilepsy & Me'. I have started it however books need a beginning, a middle and an end............ so until I have my ending I will be unable to publish my book. We shall have to make do instead with my blog :)

Today has been a good day if it was rated out of ten it would be an 8 and I don't quite know if it is the effects of this fabulous diet or simply a good day......... I am writing today to remind myself in times to come that after the storm comes a glorious rainbow..... Today Toby and Hallie were my rainbow as they interacted on a different level. Today my children played together like brother and sister, something I have waited a long time to see. It would however be naive of me to say it was the start of the diet as we have only substituted one meal so far and Toby only has traces of ketones in his body. That said there is absolutely every possibility it is the effects of the diet as it is just too much of a coincidence..... either way I would like to share it all with you and let you know that i'm smiling in both my heart and on my face......speak soon peeps .... day two tomorrow and more diet plans to try !

Ketogenic Diary Starts

www.thedaisygarland.org.uk

Thanks to the funds raised by The Daisy Garland Charity Toby has been granted the wish to trial the Ketogenic Diet.
Tomorrow we will substitute Toby's breakfast and by the weekend he will be on the full thing which consists of a high fat : low protein : restricted Carbohydrate meal plan.

I am overwhelmed by the testimonials that I have read from other parents who have children with difficult to control epilepsy. I can only concur with my similar mixed feelings of hope, excitement and fear all in one.

We have learnt to accept the changes in our lives since Toby developed seizures for which we have no cause. We can cope with any lasting effects that they have caused. We just pray for some respite, for our little boy to enjoy the activities he loves with a reduced risk of danger from his seizures.

I will blog in a couple of days when Toby has reached ketosis..........

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 :)

Infantile Spasms

For months consultants have been conflicting opinions regarding Toby's Seizures. Toby does not lose consciousness yet his development has been impaired. His seizures have predominantly been in Clusters of spasms and then in between each throughout the day he has had complex partial seizures which would make him jack knife forwards resulting in him hitting his head or falling.
Toby is currently on the highest dose of Keppra (myoclonic seizure treatment) and Epilim (anticonvulsant) both of which made a slight improvement and then nothing - His doses started low and quickly got increased despite him making no improvement and his seizures actually got so much worse that we got him a helmet.
Prednisolone steroid worked almost instantly with Toby's seizures almost disappearing, the respite was bliss however the clusters of spasms returned slowly as we reduced Toby's dose.
With the help of Toby's community nurse who had witnessed many of Toby's seizures, we videoed Toby's clusters as they manifested much more frequently yesterday 28/12/11. The aim was to argue that we thought his seizures were more like infantile spasms. You can view all of Toby's videos on You Tube by typing in 'Toby's Seizures'.
Toby has been immediately prescribed Vigabtrin which they are confident will work... I am picking up the prescription today and I pray that 1, it works and 2, Toby's eyesight is not affected :(