You have decided to go for it and managed to get your child on the diet!  WELL DONE.  If the diet is successful – you will not be sorry you made this decision.

You will have no doubt been told that the diet is ‘difficult to manage’ and ‘time consuming’ – and for the first few weeks you will probably feel that it is.  There will also be times when you could cheerfully throw the scales through the window and ‘pop down the chippie’ after all you have a meeting to prepare for tomorrow and/or a ‘little mermaids’ outfit to conjure up by tomorrow morning for a school assembly, the letter for which your darling little one has only just produced 5 minutes ago (after spending 3 weeks buried at the bottom of her bag) and where DID you put your car keys?  All of this going on whilst you are watching the pet cat bring up a fur ball on your new rug!!!  At this stage I normally retreat to a quiet place (usually the toilet) for 5 minutes alone with a bar of Dairy Milk - but you will find something that is suitable for you to compose yourself and then get on with it.  A good sound off at times normally helps, so please feel free to use the forum on this site and have a good old whinge – you are NORMAL for doing this and you will be in very good company because I guarantee that there will be some of us that are feeling exactly the same!

Preparation, organisation and planning ahead are the key words I would use to describe the best way of managing the diet.  That is where your pen and notebook will come in very handy.  Write yourself lists to start with – anything that you need to remember to do etc.  After a while you will probably find that you don’t need them anymore, but if it works for you then carry on.  Your confidence will grow with time and your daily routines will change to incorporate the diet until it becomes almost second nature – a bit like learning to drive really, you end up doing it without thinking.  The diet ends up about as time consuming as making up bottles for a baby each day.

In the meantime, here are a few helpful hints and suggestions that will hopefully make your life a little easier.  Once you have been doing the diet for a while, you will probably come up with your own suggestions – let us know and we will add them to the list to help other parents.  I am now 4 years into the diet with Matthew and I am still learning things mainly from all the other parents on the forum!!!

When you first receive the menus for your child from the dietician, the quantities may look small.  When you weigh out the quantities, they will look even smaller!  I nearly had heart failure when I prepared Matthews first meal and I NEVER thought he would be happy with such a small amount – especially as he had eaten so very well beforehand.

Remember, the Ketogenic Diet also acts as an appetite suppressant, so after a short time your child will not feel hungry any more.  Different centres may start children in different ways.  Some will start with a ‘fasting’ period either in hospital or at home.  Some will start children on a lower ratio i.e. 2.5:1 or 3:1 and then gradually build up to the level that suits your child.

The first two weeks can be a bit rough, sometimes this period can last longer and sometimes it only takes a couple of days to get the ketosis at a good level and things to settle down.  Each child will have to be monitored individually.  Try to keep focused and keep positive.  Take a day at a time.

N.B. If you check on our medical board section you will see a write up that has been done by our US dietician, Carrie Loughran, on what could possibly happen when a child first goes into ketosis.

If your scales come with a great big plastic bowl – put it away.  Instead use a couple of small plastic bowls to weigh in, the quantities will not quite seem so small.  Weigh out one ingredient and then zero your scales before adding another.  You could also use the actual pan you are cooking the meal in to weigh instead of using a bowl.  Again just zero your scales after each ingredient.  If you are using the actual cooking pan to weigh in, check how high your scales can go before you start.  If your scales don’t go high enough – you may have to use a light plastic bowl to weigh in (this is also where your ‘plastic spatulas’ will come into their own).

 N.B.  For scales to weigh accurately, they should be on a completely level surface and well away from televisions, radios, mobile phones etc.  It is also a good idea to spray them with an anti-static spray occasionally. 

Always useful to note things down whilst you are preparing a meal.  A notebook is quite useful for this as it keeps all your notes in one place instead of lots of different bits of paper lurking around.

You may want to note down the quantities you have used for each particular vegetable or if you have used some of the vegetable allowance for fruit, ie. 30g spinach and 10g raspberries.  However you have split quantities or made the meal, it is advisable to note it down for future reference. 

Whatever you feel is important – write it down.   This could also include whether your child liked the meal, any worries you might have, and how you have done something and any ideas that you would like to develop, as well as any questions you want to ask your dietician/doctor or us!

Once you have done the diet for a couple of weeks/months (or maybe even before you actually start – depending on your dietician!) you may want to look at creating your own meals and the EKM Ketogenic Calculator is THE programme to have!  If you wish to have this computerised meal planner then you will need confirmation from your dietician that your child is medically supervised before you will be able to download the programme.

For more information on the EKM Ketogenic Calculator then please go back to the Main Menu page.  This meal planner is totally free of charge and personally speaking, I would not be without it and this meal planner is the only one that is endorsed by Matthews Friends.

Always keep a bowl of this made up in your fridge.  Make one up in the evening whilst you are making a cup of tea during the adverts! (That’s how much time it takes up!)

There are loads of different flavours and they are a very easy pudding.  1 sachet will make up a pint that can be 3 or 4 puddings if you just take a couple of dessertspoons from the bowl of jelly.  The trial team from GOSH give this as a ‘free food’ BUT it cannot be given out as and when in limitless supplies throughout the day.  I use it as a pudding for Matthew about once a day, sometimes twice, but only ever after he has finished his meal.  Your dietician may do things differently – so PLEASE check with your own dietician first. 

You can also make up cream jellies as a nice pudding.  Instead of making it up with all water, add in the cream/calogen/liquigen (whichever you are using) for the meal allowance.  It is a good way of getting the fat in and it is also nice for your child to have a pudding and not feel that they are missing out on anything.  Matthew’s sister Alice often raids the jelly bowl after dinner (come to think of it, so do I!)

Mousses – Another Pudding Idea and Another Way to Get the Fat In!

Dissolve sweetener tablets (or use some Hemesetas Liquid - see shopping lists!)
and 2g of cocoa (1 level teaspoon is approximately 2g) in a small amount of boiling water and stir this until it makes a paste.  Add about a third of a pot of double cream to this and then whisk until the mixture becomes stiff and you have Keto chocolate mousse!  You can then either weigh out individual portions for several meals and freeze them in your containers or you can keep the bowl covered in the fridge for a day or so and weigh it out as you need it for a meal. 

If you don’t want to use cocoa, you can use the vanilla, orange, lemon or strawberry flavourings/essences for different flavour mousses, but you only need to use 4/5 drops of them or you can use Da Vinci Syrups.

If you make up a small jelly in a pretty bowl and then cover it with a mousse and put a raspberry or half a strawberry (from the allowance – NOT extra!) in the top – you have a keto trifle.  Which looks nice for a special occasion.

You will see from the photographs and recipe ideas that they can have cake.  Get your dietician to give you the quantities for your child.  It may be a little trial and error to get it right at first, but they are very useful for breakfasts.  If you make a batch of them at a time and freeze them – your mornings can be a lot less fraught! 

Wendy (Matthew’s Friends very own ‘Nigella’!) is an absolute whiz at making up cake and cookie recipes, so keep having a look at the recipe section for more ideas and photographs.  Matthew absolutely loves her to bits – Thanks to Wendy he is now enjoying Blueberry Muffins, Chocolate and Nut Muffins and Pancakes for breakfast!

We are bombarded with the fact that our children should eat plenty of fruit and vegetables.  When it comes to the Ketogenic Classical diet then try to forget fruit.  If your child goes on the MCT version – then you can get a lot more fruit and vegetables into their diet.

If you do want to use fruit on the classical, use the ones that are lower in carbohydrate, raspberries, rhubarb, blackberries, cranberries and redcurrants.  Strawberries are lower in carbs too but they have so little fibre content in them that it is hardly worth ‘wasting’ the carbohydrate allowance that your child has. 

You will find that if you use the carb allowance for fruit, you will get far less than if you were to use it on vegetables.  The meals will look even smaller and your child may not get as much fibre content as they would if you just concentrated on giving them vegetables.  This can obviously lead to problems with……….

I have been very fortunate with Matthew, if he has been slightly constipated I have just upped the amount of fluids he has and also increased his vegetables to mainly spinach and curly kale – this has always proved successful FOR HIM and Rhubarb can move mountains with Matthew!!!

Saying that, I do know that a lot of children can suffer with this problem on the diet especially the classical version.  If your child does suffer from constipation then try the above and check out the fibre favourites that Wendy has prepared for us.  This will tell you which vegetables are the best to use.  Her top five are:

Chinese Leaf
Curly Kale
Mushrooms
Mustard and Cress
Spinach

If that does not help then Wendy recommends using Magnesium Citrate – but once again, PLEASE discuss this problem with your dietician/doctor BEFORE giving your child anything extra.

N.B. Some medical teams will prescribe something to help with this problem and if you want to know the most keto friendly preparations to use then please go to our medical board section of the site where you will find a list of the most keto-friendly medications to use – This has been prepared for KetoPAG and MF by the Pharmacy at Great Ormond Street Hospital.

One of the subjects that has come up on the parent questionnaires is measuring ketones using the urine analysis sticks. One mum had been advised to hold her child over a pot until the child has a wee - personally that conjured up a vision of a mum with extremely large biceps and all the time in the world on her hands - neither I feel being correct! If you know EXACTLY when your child wants a wee then obviously this method is not a problem - but for a great many of us this is just not a practical solution. If I had tried this method with Matthew then I would now be in a wheelchair with a broken back!

So for those of us with children in nappies/wearing pads, here are some alternatives:

Put some cotton wool/toilet paper inside the nappy. When you come to test then (wearing rubber gloves!) squeeze the cotton wool/toilet paper until some urine drops onto the stick.

If that is not proving successful (Matthew had an uncanny knack of being able to have a soaking wet nappy but bone dry cotton wool - how he did it I still do not know!) then rip a small section of the nappy (if you find a warm area then all the better - means there is fresher urine)and place the ketone stick inside the ripped part of the nappy until it rests against the wet gel and squeeze it against the gel. The urine is then squeezed onto the stick and you can get a reading. 

One of our mums in New Zealand (Yes, Matthew’s Friends are everywhere!) recommends another way –

“One of the nurses there showed me a great trick with a syringe - take the plunger all the way out, squeeze the cotton wool down inside the syringe case (actually gauze pads were easier to manouevre) and put the plunger back in. If you push all the way right to the end there aren't many times you don't get enough urine to test. Especially handy if you need a bit more volume for say a mutistix test - drip with the syringe onto each colour on the multistix.  Might be quite a good way if you are having to do it direct off a nappy too, if you put some of the gel spongy bits (the inside nappy stuff) into the syringe, you won't have any risk of the contact with the gelly bits contaminating the reading” – thanks for that one Susan.

There are bags you can get from the doctors that literally 'stick' to your child, but seeing as we have to measure twice a day, that would be really uncomfortable for them.

There are also blood ketone monitoring systems (similar to diabetes) where just a pin prick on the finger is needed. These have been trialed as part of the Great Ormond Street trial and are far more accurate than the urine sticks. Matthew doesn't even notice when I do it now.

The blood ketone monitor is available in chemists over the counter. It is called the Medisense Optium. It costs around £15.00. You will then need to get the blood ketone strips and lancets. You will need one of each, each time you measure ketones. As of Thursday 1st July 2004, both are available on prescription, so speak to your GP to get a prescription sorted.

Wendy wrote the following piece for us about blood testing for ketones:

Before you start, prepare everything - put a lancet into the lancing machine and set it to 2 or 3 (3 if hands are cold). Tear open the foil pack and remove the ketone strip - push it into the top of the monitor. Get a tissue ready.

When it comes to finger pricking and getting enough blood, it can be tricky when you first start! You will soon get used to it and play nurse with your child like a pro.

Make sure your child's hands are warm - they suggest washing hands in warm soapy water which helps. Rub his/her hands and clap a few times before going for it! I haven't tried this, but my pharmacist suggested using the ear lobe as there are far fewer pain sensors in the ear lobe than in the end of your finger obviously!

Once you have a drop of blood, hold the purple spot of the strip (still in the monitor) under the drop of blood and hold it for a moment or two, until the display shows 3 dashes. This means it will now take a reading. If you find it doesn't do so, you can squeeze the hand and put another drop of blood on until you get a reading. Be patient, it doesn't always go to the 3 dashes straight away.

A little tip - when in bed it's easy to get blood, because the body is so warm.

The tissue is to hold on to the finger tip if it's bleeding now!

I have spoken to Medisense and they have said that if it gives a reading, then it has taken enough blood for it to be accurate. I must confess that although I believe it is more accurate than a urine measurement, I had a situation where Francesca's reading was lower than I expected, I re-did it a few minutes later and got a much higher measurement. So I don't believe it's 100% accurate, but it's certainly good enough.

I have been taking readings in the morning to see what Francesca's waking ketones are, which vary from 2.4 to 3.9 on the whole, sometimes higher. I did get a 5.7 morning reading once which I couldn't believe and put it down to soy yoghurt and almond oil the night before!

Optimal levels for seizure control are apparently 3.84 to 5.76. - Thanks Wendy.

Now this is a subject that is currently under a GREAT amount of debate.   Our US dietician swears by using this method in her fine-tuning of the diet and a few of our other KetoPAG dieticians also use this as a fine-tuning ‘tool’ and I also know of a Neurologist in Denmark that swears by using this method.  HOWEVER the only study available (at the moment) which backs this up is one that has been carried out on rodents.  Needless to say, until a proper trial has been carried out on humans there is no real medical evidence that monitoring glucose plays a significant role in the management of a ketogenic diet and certainly quite a few of our centres in the UK do NOT use this method.

However, IF your centre does monitor glucose the once again you can use the Medisense Optium machine and again, you can get the glucose measuring strips from your GP on prescription.

PLEASE REMEMBER – IF YOU ARE USING THE SAME MACHINE FOR BOTH KETONE AND GLUCOSE MEASURING – YOU WILL NEED TO RE-CALIBRATE THE MACHINE EACH TIME YOU USE IT.

For further information please read the instruction booklet very carefully which comes with the Medisense Optium Machine.

There will be a need for your child to have vitamin supplements on this diet and as
there seems to be so much to remember when you first start off – write a list of the medications/vitamins which are to be given at each meal and pin the notice up on the fridge or somewhere where you will not miss it! 

Update this list whenever there is a drop in medication (Yes, I did say DROP in medication – think positive!) or a change in the vitamin supplements that are given.

By the time you throw all the medications in the bin (Yes, I did say that – keep thinking positive please!) you will probably not need your notice – but you might want to put a few banners up saying ‘Med Free’!

Unless you cook loads of fresh vegetables each evening for your family, then it is advisable to keep some bags of frozen veg so that you can just take out small amounts when you need them and you do not waste a lot of fresh (and expensive) vegetables.  The same can be said of fruit – buy frozen cranberries (when in season), raspberries, redcurrants etc. 

You can also buy small bags of frozen vegetables that you can microwave in about 2 minutes and they are ‘steamed’ in the bag –VERY USEFUL in an emergency.  Most supermarkets have their own make but Birds Eye do them as well – the ones containing carrots, cauliflower and green beans are Matthews favourites, but he also likes the ones that have asparagus in them as well! 

You can prepare meals such as quiches, breakfast omelettes, mousses and keto cakes and biscuits and freeze them all.  Batching up is a good idea – if you are making one quiche – make four at the same time and freeze 3.  Good for emergencies and for someone else if they are looking after your child.

When you get into the swing of it, you will be batching up your own meals without any problems and you will have a freezer full of small plastic containers!!!

When you are cooking your vegetables, steaming is good way of doing it as it helps retain all the vitamins and minerals in the vegetables.  You could also par-cook them like this, store them in the fridge for a couple of days and just take a meals quantity at a time.  Finish cooking them off by frying them in butter, it’s a good way to use up some of the fat too – let’s face it, most of us would like to be able to have butter on our vegetables!

It can be done.  You could take a meal with you and ask the restaurant to just re-heat it for you and serve it on one of their plates.  The only problem I have run into with this is that sometimes they are concerned that if the child gets food poisoning you will blame the restaurant.  I have dealt with this by firstly phoning the restaurant beforehand and explaining the situation and if necessary, taking in a signed letter confirming that I have provided the food, asked them to re-heat it, I have then tested it and agreed to give it to my child – therefore I am responsible.  An easier way to get round it is to just take a meal with you that doesn’t need re-heating.

You could also check out the menu beforehand and just take your scales in with you together with the additional extras you might need – always a source of great amusement to other diners when you are busy weighing out bits of chicken, 4 runner beans, a carrot and half a pack of butter! Note for the ladies here – if you decide to take this option – forget the small evening bag – you’ll need a big one!

Some restaurants can be very helpful and will do as much as they can to accommodate your needs – so it is worth giving them a ring beforehand.  Those restaurants that refuse point blank to agree to you bringing your own food in for your child and are totally unhelpful I would suggest the following:

1. Don’t eat there.
2. Phone the local paper, completely trash them and accuse them of discrimination. You will not necessarily get any results from this, but it will make you feel a whole lot better!

What can I say….. I hate small-mindedness and ignorance!

Check with the school if they have a microwave and whether they would be happy to re-heat a meal for your child at school.  Some school kitchens can be very helpful and if you send in the raw ingredients already weighed out, they will cook the meal for your child.  Again something like the respite/emergency plan may be appropriate giving them clear instructions on how to cook the meal and to make sure that everything is scraped out of the pan.  Have a chat with the school and see what will be appropriate for your child.

Cold packed lunches are possible, with dips and vegetables or the keto quiches are good for this as well as they can be eaten cold with salad and then a Jelly (either a cream one or plain for pudding).  This is where your cool bag and ice pack will come into its own.

Again, keep an eye on the recipe section there are going to be new ones added.

Depending on how early you get up and how rushed you are in the morning (if you are anything like me, it doesn’t matter how early you get up – you always seem to be in a mad rush) – it might be a good idea to prepare breakfast and a packed lunch the night before, but you will find yourself getting into a pattern before long that suits you and your family.

 
Those are the top tips for now – but again, if you know any good ones – TELL US – we can then post them up on site for other parents.

Thanks.

Emma Williams.
Founder/Chief Executive – Matthew’s Friends
Parent Representative – KetoPAG

      Updated: 10th April 2006