I want this to be a journal of our journey, its highs and lows.
This is a really long first post, It is a collection of all the blog posts that I have written for the support group. I am starting this blog but don’t want anyone who reads it to miss out of any of the previous information, or entries.
I really want this blog to be like a journal where I can let out my anxieties about the diet and the consequence of it whether they are emotions, physical problems for my son, confusions about meal, calculations or anything else. But all that has come with my son going onto this special diet and our journey through it.
Diary entries from the start to today.
The Start Of Things
25 August 2011
My son starts his Ketogenic diet. soon our actual start date is 27th August which is this Saturday. We have managed to increase his Fat intake and decrease his Carbohydrates over the past three to four weeks in order for him to start the Modified version of the Ketogenic diet, comfortably. He is starting on 34g Carb per day which I have split, to suit him, into three meals of 10g and 2 snacks of 2g each. He is actually doing most of the day the Keto way having either lunch or dinner as an exception at present until Saturday that is!
I wont be calling any of the people I mention on here by their real names for security reasons, but will use nicknames for each of them.
My son Jah had his first Tonic Clonic seizure a month after his third Birthday. He has recently turned five and his seizures are still proving difficult to control. He takes Sodium Valproate, Keppra and Clobazam at present and also has Calcichew/Vitamin D3 as he became deficient due to the high doses of medications in his body. We also have Midazolam for him, which he has bucculed when he fits for longer than five minutes or if he has three Tonic Clonics within an hour. I’m sure as I write this that those who read it are quite familiar with Epilepsy and maybe in a similar boat to us. I hope, from starting this blog, as I continue to write of our experiences that I will help others who are experiencing similar things not to feel alone and take some of the fear they have away as I have at times felt scared, alone and also quite trapped in the past. I hope to make friends through my writing and as I learn more I will share it along the way.
Getting Creative In The Kitchen
01 September 2011
Jah is now on 28g of carb daily, he has been eating the Keto way since last Sunday and on Tuesday following a conversation with his Dietitian the carb reduction was put into place.
My little Jah loves trying all the new foods I create for him, he loves being involved in the kitchen and weighing things with me. I have managed to experiment with lots of new ingredients I wouldn’t have usually used and felt appreciated because they have been eaten and enjoyed. The trip to the supermarket made me cry though, he was constantly asking for foods he can’t eat and I had to keep saying ‘no’ to him, I could see him getting more and more upset each time. I finally gave in and sent him with his Dad and his little brother EJ to the Toy department and said yes to them both having a new Toy each, of their own choice, while I continued to shop quickly. The shopping cost a fortune so I decided that next time I will go alone. I think it was a good reward for them though, EJ is being quite supportive of Jah’s new diet (as supportive as a three year old can be!) He isn’t asking for chocolates, biscuits or sweets as he knows Jah can’t have them, and he keeps mimicking me asking Jah if his food is nice and trying new things himself. Amazing the effects of a quiet conversation explaining things. I just hope it continues to be like this.
I am quite surprised that Jah is actually enjoying different foods as he has been such a fussy little eater in the past, at one point he would only eat potatoes, refusing everything else offered to him. I managed to conquer this by rewarding him with potatoes as a treat if he ate everything else on his plate first. He’d try his best and that’s all anyone can ask really isn’t it!?
I have a wonderfully lovely little omelette I cook for Jah that he really enjoys. Its a variation of a traditional yet simple Spanish Tortilla. containing Celeriac instead of potato and spring onions instead of onion. Celeriac is a food I had never even heard of before Jah started this diet, when I first saw it I though what a strange looking thing, when I peeled it like a Swede and chopped it up I smelt it was like Celery I thought no one would like it. Wow how pleasant it was when we all enjoyed eating it, and not a tangy celery chip at all just extremely similar to a potato chip just much more puffy and chewy in texture, I think that’s what makes them so nice!
Here is the recipe for Jahs favourite meal at the moment.
Celeriac Omelette
Contains 1 ½ g carb
50g Celeriac
20g Spring Onion
Egg
Mild Olive Oil
Butter
15ml Double Cream
Peel and Chop Celeriac into small sliced diced pieces.
Peel and Cut spring onions
Fry both in Olive Oil until browned and tender
Wisk Egg and add a little butter and double cream
Reduce the heat and add the egg to the pan moving the diced celeriac and spring onions as you pour so they are in the middle and it looks even all over.
Fry over a low heat for about 3 minutes then cover pan with clean plate and turn the omelette out onto it, the egg may not be cooked on the top this is to still flip it but maintain the moisture balance.
So slide the half cooked omelette off the plate back into the pan
Cook for about 2 minutes
Then serve
From Food Picking To Finger Pricking
04 September 2011
We’ve had a really hard day today, Jah hasn’t wanted to eat anything except Salmon and Pasta so he has had his measured amounts for his Dinner, and he has picked at his other meals and snacks. I had to really encourage him to drink his vitamins I felt like I force fed him. He seems fine in himself though so I don’t think it’s a bug or anything. I think he may be getting bored of the lack of variety and choice I suppose we will have to just come though this.
I’m not able to be too creative with his dishes as his Dietitian has ask me not to be, at least until we get past the trial period. So I think I’ll just up my game a bit with presentation like I did when he was about 2 years old. I’ll make hedgehogs and smiley faces out of his Celeriac’s and carrots. This might help him to eat them. I have noticed in the past that he eats things that I give a character to like speaking sausages saying “Hey you! Yeah you, are you gonna bite my head off?!” And he has! So I think I’ll bring some of that back too.
This started Friday at school, for lunch I packed him his favourite celeriac and spring onion omelette, but though I asked them they didn’t warm it for him I even write a note in his lunch box. But he got it cold and really struggled to eat it. Since them he hasn’t wanted to try anything except things he likes cold. I have ordered a Aladdin food flask now so I’m hoping when that arrives in the post it will resolve things, at least at school anyway.
On a brighter note though, Jahs Ketones are becoming steady in the right figures since we dropped to 24g of carb per day and Dietitian is very pleased with that. Also Jah is quite curiously interested in the blood monitor and because I have allowed him to put the strips in himself and also the lancet today and yesterday, he is more or less able to do it himself and we don’t have any screaming when we need to do a finger prick anymore.
I’m so proud of him and his little brother.
Two Steps Forward And One Step Back, I Suppose That’s The Way It Goes.
10 September 2011
Well we achieved a really good level of Ketones for a good few days but they have recently slumped back into the 1s and 2s. I thought it was good going as our dietitian told us that 24g of carb per day was quite a lot to allow Ketones in the 3s morning and night. I’m thinking when I speak with her next we will be lowering his Carb intake again.
I have made a couple of observations on this though, I used to give Jah his medicines a couple of hours before checking his blood levels, but now I do it about 30 minutes after, this makes me wonder if the carbs in his medications are effecting his Ketone levels within that time and previously they had returned back to higher levels given that little bit more time.
I’m not sure how this would effect Ketone levels but I have also noticed on days when there is a change in routine or quite an exciting time then his Ketone levels are a lot lower than on usual routined days. My little Jah doesn’t like change and it seems to upset him a lot he usually tries to hide or becomes clingy with me or his dad whenever there is a social event to attend or a get-together of some sort, even if it’s at our house he will not be his usual self, he becomes so very quiet and I can see he isn’t comfortable. We have recently had an 18th Birthday get-together, only a very small and quiet family time, that lasted no longer than 1 hour. Since that change Jahs Ketone levels dropped. It may have nothing to do with it, may just be coincidence, but I still wonder as I know how exhausting emotions can be at times whether this could have had an effect.
Anyway I suppose I should have just jotted this on a piece of paper but I decided to share it instead.
Oh What A Do!!
11 September 2011
I have a friend who I have known since we were eleven years old, she is quite a posh friend from a wealthy background who always does things properly. Well this friend is getting married early next month, it’s going to be an all day event, I have my new dress being altered, as I write this, I’m so lucky my sister is a dress maker. My Husband and lads will all be in shirts, trousers, waist coats and my husband is also going to wear his suite jacket.
My friend telephoned me today, just to double check our food orders for her wedding meal, she just said “Now none of you have gone Vegetarian on me have you?” so I answered “No….” But because of her pre-wedding nerves and excitement she was speaking on overdrive and I didn’t get to finish my sentence before she was off.
A little later I was chatting to my husband about this and I have decided to keep our son Jahs meal with it’s meat and take the scales and olive oil with us. I’m still laughing now at the visuals, I am imagining us all sitting nicely and well behaved when out of my rather large handbag comes a set of digital scales to grace the well decorated table, then the Aladdin flask of Jahs roasted Celeriac in Bovril gravy and the bottle of olive oil, than there’s the bibs, spoons and flavoured Greek yogurt mixture that follows for dessert.
I have never conformed to the norm, nor been very good at keeping up appearances, I just hope we don’t make too much of a scene. 
My husband and I were saying we’d be like the Mr Beans there. Funny!!!
Why Are The Doctors Doing This To Us And People Do Some Stupid Things Sometimes, Don’t They?
22 September 2011
Aaaarrrrggggghhhh, I feel like I am banging my head up a brick wall. Our Doctor (GP) has decided now not to prescribe Jahs Ketone strips. This is the third returned repeat prescription I have received back from our practise this month. The first one was for Jahs Clobazam and Midazolam, our GP decided that because these medications are specials then they would not be prescribing them for us any more and that I would have to ask the Hospital. They had previously prescribed these for a year without a problem. They didn’t give me any notice and I was quite mad to be honest but because I am a forgiving soul I let it go, not causing any fuss just approached the Hospital and now we get his special medications supplied by them. So two places to ask for meds so far. Following that I put in a repeat for Jahs Epilim, Keppra, Ketocal and Calogen to find out when I went to collect the prescription that they are no longer able to prescribe nutritional supplements. I showed them the hospital request letter, but still they refused, so our dietitian has had to arrange Jahs consultant to prescribe them in order for them to be delivered out to us. however we had ran out and because our GP wouldn’t prescribe them I had to collect them from our dietitian in person. I can’t actually believe that the GP can be like this, I have been registered with this practise all my life, I’m quite clueless.
Today I went to collect the prescription for Jahs Ketone strips for his blood monitoring, however the note I actually got placed in my hand instead of the repeat prescription read “Not available, contact hospital.”
I called the GP, by now I wanted answers, surely this is not fair as the hospital had sent proper documents to ask that they prescribe these items, I have copies, and GP had already been prescribing them for Jah, Why have they stopped and why so suddenly? Couldn’t they have at least given me some warning so I wouldn’t run out????? I feel a fool for actually relying on them now, and disgraced that they were able to leave us short of everything. Doctor’s reply was it’s not their area and if the Hospital want these items prescribed for Jah then they will have to prescribe them for him themselves. Sounds to me like it’s two separate pots of money, reading in between the lines.
I will not stop this diet for Jah even if I have to beg for, or personally buy these supplements, vitamins and equipment. It’s working and it’s such a miracle diet I will fight for him to continue on it.
The other thing that happened today, which has really annoyed me, was this…. Jah came home from school today talking about Candy Floss, yes that’s right Candy Floss, Jah had made it with his school friends in class and he informed me that he tasted a little bit. What??? I just can’t believe it really, all the hard work, midnight baking and persevering to get him to eat the new foods. Then the school go and destroy my effort, I don’t know if I have any more feet left to shoot. I feel shot in both of them today. The first thing I did when Jah started back at school following the summer holidays and him starting the diet was take him into school and have a lengthy talk with his teacher, explaining the diet to her and I gave her the print outs off Matthews Friends site so she could read up on it more. Jahs Ketones were low tonight, as a consequence to tasting Candy Floss. Jah has a badge on his helmet that I made for him as he doesn’t speak up and just follows peoples lead, as most five year old do, he always does as he is told even when he knows it’s wrong, aaarrgghh, so I made a badge for the people who are influencing him, it reads, “I am on a magic diet for epilepsy and can only eat what is in my bag.” Doesn’t that say enough???? What have I got to do ???!!!!
Just An Update
21 January 2012
Just a short note to add an update on here. Jah is doing really well on the Modified Atkins version. He is down to 20g carb per day now, which I am finding a little difficult but he isn’t. We are weaning him off one of his AEDs so if Gods willing he will be on two AEDs in about seven weeks time. We started this wean just after Christmas and we were so anxious about it, I still am actually. His Ketones took a drop when we introduced two new supplement medications, these are needed because Jah has a deficiency now since starting the diet. But I still feel that the benefits of this diet out-weigh the not so good bits.
My cooking had got a lot faster, my frying pan well used and my freezer filled with pre-made meals for Jahs dad to warm up.
Quick Baking And Medicine Calculating
04 February 2012
My Son is not Vitamin D deficient any more and is finally off his calcichew D3 tablets, hurray! I think it must be all the tinned fish he is eating I’m so glad he likes fish, even with loads of oil and a dash of vinegar, it goes down a treat. I have been baking some new things this week, experimenting with Ground Almonds, found that used instead of flour with lots of butter, sweetener, an egg, cocoa and baking powder they can make lovely low carb chocolate cakes that Jah likes to eat for his breakfast.
Has anyone else had any problems with Potassium Citrate? It has given Jah the runs and his Ketones were all over the place. He had to come off it almost as soon as he started it. I have been advised, by his dietician, to re-introduce it, but very gradually. I’m a little concerned about the amount of potassium I’m getting him to have though, because once he is on the full amount of the potassium citrate, along with the fruitivits (supplements) he takes, I have calculated that he will be taking 6g of potassium each day. I’m sure that’s a little too much, especially over a long period of time!?! Though I don’t want him to develop renal stones and the potassium citrate will help to prevent this due to the alkalisation of his urine. I also don’t want his blood to become toxic from excessive potassium. I suppose I’m just thinking too much about this. I have asked the dietician to check this with the consultant who prescribed it for him and I wont re-introduce it until I receive proper confirmation.
Pancakes With Grandad
09 February 2012
Thursdays are when my kids Grandad comes for his tea. I always cook for him. Today everyone fancied pancakes instead of doing Jahs usual Keto pancake I tried my own recipe, simply ground almonds, double cream, a little water and an egg. Jah was able to have two of these for less carbs than one of his usual 4g carb ketocal pancakes.
We all enjoyed our early pancake day.
Recent Worry, What To Do Next?! And A Lovely Egg Custard Recipe.
28 February 2012
Finding things a little hard and tough at the moment. Jah has had yet another tummy upset, this was shortly after introducing the Potassium Citrate again, once we’d weaned him to two doses per day it just started coming back out again. He still has very little appetite as the runs only stopped this morning, the sickness stopped three days ago. I have had to find foods that he will eat in order to get his carbs in at all and feed him, I am actually quite worried about how thin he seems to be getting lately. He has gone off most of his foods and is only picking so I’m working twice as hard as usual preparing meals then trying to get things he will eat in him. I liquidized beef and tomatoes yesterday as this is usually a favourite I cooked it expecting him to ‘yum it up’ but I ended up feeding him the baby food version of it.
I have called the dietition regarding this and have left a message so she will call me back. I have started adding extra Ketocal pancakes into his daily routine as these contain everything in one taste, I have really found that stuff useful today as he doesn’t seem to like the oily fatty textures of his usual foods.
I’m used to plates of dinner all finished and the plate licked clean. Hopefully taking him off the Potassium Citrate again has done the trick and it’s probably just a little bit of time that’s needed before things get back to normal again.
I have found a lovely recipe for Egg Custard, while I have been experimenting in the kitchen. It’s really simple and totally delicious here’s the recipe
LOW CARB EGG CUSTARD
1 Egg
30ml Double Cream
½ teaspoon Vanilla flavouring
40 drops liquid sweetener
Wisk all the ingredients well in a microwave jug.
Microwave it on full power for 1 minute turn it over and Microwave it for 20 Seconds.
Leave to cool and serve.
Thanks for reading. May God Bless you 🙂
Surrealchick's Keto Journal 