Preparing Yourself and your Family,
Things to Consider and Suggestions to help get You and Your Child Started.
Commit Yourself for 3 Months.
In the grand scheme of things, 3 months is not a long period of time. When I started Matthew on the diet I cleared the decks at home and cleared my diary. Get any lingering paperwork out of the way or any unfinished jobs (huge piles of ironing is a favourite!) Anything that plays on your mind with the ‘I must do ……’ – do it and get it out of the way. It is usually the case that if there is to be any improvement using the diet – you will see it within the first 3 months. If there is no change whatsoever, either in seizure control or the day-to-day well-being of your child, then it is unlikely (although not always the case – each child must be evaluated individually) that the diet is the appropriate treatment.
If, at the end of 3 months, things have not gone well at least you will know that you did your very best and did everything correctly. We have difficult enough decisions to make in any event without punishing ourselves with ‘if only I had done this’ or ‘I really didn’t do that correctly and if I had, would the diet of worked?’ Believe me, 3 months will fly past.
What do You Consider Failure/Success Using the Diet?
Think about this one and discuss it with your family and with your child (if appropriate). For some, complete seizure control, no meds and back up to speed at school is success, anything less than that is failure.
For me, the most important thing I wanted was to see what Matthew was like off medication. If Matthew’s seizures stayed the same but he was on the diet instead of the meds then that would have been success. As it was, I got far more than that, and although Matthew has never been completely seizure free, his quality of life is 200% better. For our family the diet has been a complete success.
Be really honest with yourself as to what your expectations are. Deep down, we all hope for complete seizure control, no meds and an end to the nightmare and for some, that dream WILL come true. For those of us who have children with very difficult to control epilepsy, that have gone through years of medication, seizures and hospital visits, it may be wise to lower your expectations at first and take it a step at a time.
Don’t set yourself up for disappointment.
I am not encouraging you to be pessimistic, I am asking that you be realistic, but do try to focus on ALL the possible benefits of the diet and try and get your child to do the same. It will make it easier for all of you.
Discuss it with your family, all of them, siblings included. Give them all the information you have and make sure you have their support. Some people have experienced members of their family saying it is a ‘fad diet’ – this is not what you need. Explain to siblings that they won’t be able to share their sweets with their brother/sister because it could make them poorly (or whatever terminology works best for your children). Again, ask for their support and understanding for at least the first 3 months. After that, if the diet is working well they will see the results for themselves. It is important that you have as many people on board to work WITH you, especially in the beginning. The more support you have, the better the chances of success.
Your Childs School.
Tell them that your child will be starting the diet. Again give them copies of all the information you have and that you will have to send in packed lunches every day and possibly a snack, depending on the school routine. Advise them that your child CANNOT eat/drink anything that you have not provided. Send in the appropriate drinks for your child to have at school and ask them to ensure that your child drinks regularly.
Explain to them that your child must eat ALL of the meal and ask them to help ‘scrape’ up all the dressings, sauce etc.
It would also be a good idea to ask them to let you know if others will be having food for any reason e.g. sweets for birthdays etc, so that you can arrange something different for your child (e.g. a cookie wrapped in cling film with pretty stickers on it). This will help your child to feel included with the rest of the class.
If you feel it is appropriate, ask the school to explain the diet to the whole class, telling the children why your child is going on a special diet and the fact that it could really help their classmate get better. This will hopefully help the other children in the class to understand why they must not share their treats with their classmate. It will also gradually, but positively help increase knowledge of the diet. This idea might fill some of you with absolute horror, but you might be surprised, children are far more accepting and open to things than adults in a lot of ways. Only you can decide whether this suggestion is right for your situation.
Matthews Friends will also write to the school if you wish with an information pack on the Ketogenic Diet.
If your child goes to a respite centre, you will definitely have to talk to them. Provide them with all the information you have. You may run into problems here. Some centres may refuse to take your child because they will feel that they are not in a position to prepare the food for your child whilst having to look after other children as well. If that is the case, ask if they would be prepared to accept you bringing all your childs food in and all they have to do is re-heat it. This may seem a lot of work for you, but once you have gained confidence it will not be too difficult to do.
If they are willing to manage the diet whilst your child is staying with them – prepare a booklet (like the example respite/emergency booklet shown on the resource section). Visit them beforehand and provide them with scales (if necessary). Take them through everything and how you do it.
The first time your child visits the respite centre, stay close to home and be readily available on the phone to answer any questions they might have. Yes, this can be a pain to start with and extra work for you, but in the long run it will provide you with peace of mind.
Again, Matthews Friends can supply information to the Respite Centre if you wish.
Any One and Every One Involved with Your Child.
Talk to everyone involved with your child health visitors, social workers, babysitters etc. Make sure everyone knows - this will reduce down any chance of mistakes being made and ‘extras’ or ‘treats’ being given to your child. It will also help you to know that you have covered every angle!
Never stop asking questions. Even if you think they sound daft, ask it anyway. If it is worrying you, then the subject matter (whatever it is) needs to be addressed.
Preparing Your Child.
Before you actually start the diet – try your child with a few things first. Start off with easy things like their drinks. If they are used to having full sugar varieties of squash, then go to the ones that are allowed (Tesco Value range springs to mind). Try flavoured waters instead of squash but look for the ones that have a ‘trace’ of carbs, be careful with some of them because they will have more carbs than you think.
Diet fizzy drinks can be used if your child really likes them – cherryade, appleade etc, but again check the labels so they read ‘trace’ for carbohydrates.
Sugar Free jellies – all the different flavours – try these out for puddings instead of yoghurts or ice cream or fruit. See which ones your child prefers. When they have told you which ones they like, try making them up and mixing some cream into them and then allowing them to set. This is a good way of using some of the fat up on the diet – especially if it makes a lovely creamy jelly.
Try out different vegetables – make a list of the ones your child likes. If they don’t like them on their own – i.e. plain cauliflower – put a cheese sauce over it, only make the sauce from just cream and cheese with no flour in it. See how they like that – try serving it with some bacon.
Don’t worry about weighing or portion sizes at this stage – just try and get a feel for what your child likes and if you can incorporate it with the whole families meals then great. This is also a good time to try and get rid of the sweets, crisps, biscuits and cakes. If you have enough time to prepare you can start cutting these types of things down and replacing them with berries, nuts, ice lollies made from double cream and flavourings, or some cubes of cheddar cheese, celery sticks filled with cream cheese - those types of 'snack' foods if it is appropriate.
If you can do a ‘testing’ period then this will make life easier for you, your dietitian, but most of all it will help your child realise that there will still be things that he/she likes and will still be able to have.
REMEMBER – YOU DO NOT HAVE TO BE A CHEF TO MAKE THE DIET TASTY, PALATABLE AND EASY TO DO – but it will take a little time for you to feel comfortable with things. Keep it simple to start with and as your confidence grows – so will your menus!
You will have to weigh things out at every mealtime – this will get easier with practice. You do have to be organised and keep your basic stock cupboard up to date. As far as actual preparation is concerned, once your confidence has grown, the diet is about as troublesome as making up bottles for a baby.
You will have a whinge about it occasionally, especially when you are tired and you want to sit down but you have a breakfast and a packed lunch to prepare and this is where ‘batching up’ meals can be useful – so you can just pull one from the freezer and heat it accordingly. This will help you keep your sanity at times!
Make sure these can weigh quantities to 1 gram. You can buy these scales from Argos, Index etc. They are quite easy to get hold of - they are also in the MF starter packs which are available to order from us for £20 each plus P&P.
Also note the maximum weight your scales go to as you may wish to weigh the ingredients in the actual frying pan you are using to cook with, I would advise that you get one that CAN manage this.
N.B. For scales to weigh accurately, they should be on a completely level surface and well away from televisions, radios, mobile phones etc. Also a good idea to spray them with an anti static spray occasionally. If you decide to get yourself a better set of scales than your basic starter one, then consider getting one with a mains adaptor – you will save a small fortune in batteries!!!
Use them before starting the diet and familiarise yourself with them. It is always a good idea to feel comfortable with your equipment beforehand. When you first use them (or change the battery), turn them off and on a few times beforehand, as you may find that if you leave something on them for a while the weight seems to increase. Weigh your ingredients and then take them off the scales, don’t keep going back to them – you will only worry if the weight has increased.
Spare Batteries for your Scales.
ALWAYS make sure you have a spare set of batteries in the house. I actually always keep 2 sets in the house and immediately go out and buy a replacement set when I have used one of them. I can guarantee that when your batteries go you will be in the middle of weighing out a meal and in a rush – and don’t believe the ‘battery low’ signal – it really means ‘battery gone’. Panic WILL grip you – it did me, I had to try and use my ordinary manual scales to finish off Matthew’s meal, and he wasn’t impressed when I then had to drag him out to the supermarket at 7pm when all he wanted was his bath, story, cuddle and bed!
Small Lakeland (or equivalent) Boxes.
Get yourself a few of these – always very useful. You can batch meals up and freeze them to use at a later date. Don’t buy too bigger boxes – or the amounts will look pitiful and they will also take up a lot of unnecessary room in your freezer. Your kitchen WILL become over run with small boxes and you WILL have a ‘pleased to see you cupboard’ (you know the ones, you open the door and loads of stuff falls out at you – it will be small plastic boxes!)
Very useful for ‘batching up’ and preparation. For example, I buy the extra lean mince for Matthew. When I get home from shopping I weigh out his mince portions together with the necessary butter for each portion and pop it into a freezer bag. When I am next preparing a meal I just have to pull out a bag and defrost it and I know that his meat and butter are already weighed.
Also good for batching up and freezing the ‘seasonal’ vegetables and fruit – such as rhubarb (which is excellent for constipation – but more on that later!)
A couple of these are a good idea. These ensure that you can scrape every last bit out of the bowl or pan you are cooking from.
Small Frying Pan
I use mine every day. Doesn’t have to be an expensive one – but does have to be non-stick. Ikea sell small non-stick frying pans for £2 each.
Small Plastic Bowls
Use these to replace the large bowl for the scales. The amounts of food you will be weighing will look very small in those large bowls and it is easier to scrape out a small bowl than a large one!
Small Cool Bag and Ice Pack.
For any packed lunches – be it for school or days out.
Freezer Labels and Permanent Pen.
Good for your plastic containers and your freezer bags. Write down what meals are contained in them, the date and if anything needs to be added.
(I found that a roll of masking tape does this job very well and is a lot cheaper than the proper freezer labels).
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.
Founder/Chief Executive-Matthew’s Friends
Parent Representative - KetoPAG