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..........