It is my pleasure to introduce the first of two parts of a special article for Ketogenic Diet News. This article was a special request of Emma Williams, the parent of a child (Matthew) with epilepsy currently on the ketogenic diet in England. Emma is the Founder and driving force behind Matthew’s Friends, a parent support group for the ketogenic diet in England.
I asked Emma to write an article for parents about her and her child’s experience getting started on the diet, but also to give some practical tips and advice for all of you parents out there! Section editor: Eric Kossoff MD
A Mother’s Plan
By Emma Williams
Commit Yourself for 3 Months.
In the grand scheme of things, three 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 favorite!) Any thing 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 threemonths. 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 three 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, three months will go quickly.
What do You Consider Failure/Success Using the Diet?
Think about this one very carefully as it is really important and discuss it with your family and with your child (if appropriate). For some, complete seizure control, no medications 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 for me as the side effects of the medication were just so awful to live with. As it was, I got far more than that, and although Matthew still has some seizures, his quality of life is 200% better. For Matthew, his sister, and me 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 as the ultimate dream may be more difficult to achieve - Don’t set yourself up for disappointment from the very beginning.
Talk to Everyone About the Diet
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, and just to clarify the Ketogenic diet is not a fad diet, it is a medical treatment that needs strict medical supervision.
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 child’s school
Tell those at your child’s school that he or she will be starting the diet. 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. candy or cake 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 or their own candy and cakes). 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. I know from my own experience with Matthew that the other children in his class have gone home and told their parents about Matthews ‘special’ diet and when it is birthday time for a class member – Matthew will have a little ‘gift’ for him instead of the candy – I was completely blown away when this first happened – even his classmates parents were on board with this and the children in his class make sure Matthew doesn’t have anything he is not supposed to – they ‘look after him’.
Point them in the direction of information for the Ketogenic diet such as Matthews Friends, Epilepsy.com, and The Charlie Foundation.
Respite (Daycare) Center
If your child goes to a respite (daycare) center, 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 child’s 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 while your child is staying with them – prepare a booklet giving them all the details of the diet and again point them in the direction of information!
The first time your child visits the respite center, 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.
Anyone and everyone involved with your child
Talk to everyone involved with your child both professional and personal such as Carers and 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!
Emma Williams Founder/Chief Executive Parent Representative – KetoPAG www.matthewsfriends.org