My name is Val, I live with Richard my husband, Robyn my daughter age ten and Greg age eight. Greg was diagnosed with epilepsy just after his fifth birthday. For some time prior to this he often had ‘sicky' bouts when his behaviour would become very difficult and we would expect a ‘sicky bout’ or ‘turn’ as we came to call them. These ‘turns’ were of course seizures, the seizures became more frequent and Greg’s behaviour more hairy. All his emotions seemed to be out of control and OTT! I remember my daughter looking at some old photos of Greg one day, she said I want the old Greg back and burst into tears. We all felt that of course especially Greg.
The primary school, where Greg attended was marvellous, they tried in every way to accommodate Greg’s needs but as time went on things became impossible. There then ensued a long and ugly battle to get Greg statemented and placed at NCYPE. Greg finally started at NCYPE in January 2003 where he immediately fitted in and loved it.
Greg has mainly complex partial seizures in clusters, I can usually give oral valium in between seizures and stop the cycle. Sometimes though we end up going to hospital when the seizures become generalised and difficult to stop. Greg has tried most of the anti epileptic medications, some seem to work initially but the effect unfortunately did not last. The side effects as doses increased seemed usually to include aggression and in addition a few months on steroids turned him into a telly tubby with an obsessive fear of germs.
We were in the process of being investigated for surgery when I met Emma Williams, Matthew had just started the ketogenic diet she was very enthusiastic about it, also Greg’s grandparents in South Africa had seen the film ‘First do no harm’ and thought the diet worth looking into. At the next neurologists consultation I asked about it but was told that it had not really been successful with Greg’s type of epilepsy and was also very unhealthy. It stayed in my mind though that surely the diet was worth trying. When Richard and I went to see Helen Cross to find out if surgery was an option for Greg, it was almost a relief that it wasn’t and the fact that we could be included in a trial of the ketogenic diet made me feel we were doing something ourselves to help Greg, and would hopefully reduce his drugs too.
Greg started on the MCT Ketogenic diet in February last year. He loves food and lots of it so my biggest concern was the size of the meals. Still we decided to give it three months and see. The first month was rather a nightmare, day one seizures, day two worse seizures than Greg had had in a long time. Greg’s ketones were large very quickly, so it was difficult to increase the liquigen, it seems Greg was burning off his own fat to make ketones. He picked up a virus and so his temperature was up and down every few days and he got a rash, during this time he either picked at his food or drank the emergency milkshake. Greg also, on the days he ate the meals was prone to vomiting the lot back and liquigen puke smells vile!!!! The keto jelly seemed to have the same effect. Looking on the bright side Greg lost 5 kgs, he looks and I’m sure feels better for that. We have had to increase the liquigen very slowly as Greg does not seem to tolerate the high ketones, We have settled on a lower amount than was initially prescribed which means Greg’s urine usually tests ‘moderate-large’. With higher ketones Greg became aggressive again with very irritating behaviour (i.e. a battle to do things, ‘blacks is white’ behaviour, just like old times.). Greg’s liquigen has been set at a slightly lower rate for the last few weeks. One of Greg’s drugs has gone completely and we are practically off the second one, before we move on to weaning him off the third. Seizures are much reduced and when they have occurred I have not needed to give valium so often!
Greg is calmer, brighter and has regained his wonderful sense of humour. Much to his sisters delight he is getting homework. Greg’s still rather obsessive but that rather helps him stick to the diet. Greg has started to go out to play with his sister and our neighbours children at the front of our house now. He scoots up and down and loves it I keep a beady eye on him of course usually with a tear in, I can’t believe he is out there! Long may it last!!!!!
Updated January 2010...
Greg spent the next 5 years on the MCT version of the diet. It was part of our everyday life. When I think of the meals I put in front of Greg in the beginning of the diet I cringe, but over time they got better and better! I was very lucky that Rich was happy to have a go at cooking the keto meals so if I was away he was able to take over. Greg loves vegetables, so we started to use more vegetables for carbohydrate exchanges, making the meals much bigger and slower burning. We used a lot of MCT oil and Greg was happy to drink the Liquigen with diet coke or pepsi.
There were times when Greg got fed up and then it was time to find ways to make the food more interesting. We went out to restaurants armed with scales and Liquigen. We worked out a MacDonald’s recipe for Greg, anything to make him feel the same as everyone else. Changing school lunch to hot meals from picnic was another change that helped Greg fit in with his peers and school were happy to heat up the meals I sent in.
We used EKM to make cakes and it also meant that Greg could have a few sweets as long as they were part of a snack. We found that we had to be careful using EKM and the exchange lists because the calories could vary so much. It is worth typing in a couple of favourite meals and compare calories between the same meal using EKM as Exchange lists. Greg had a picnic meal most days, using exchange lists meant he got around 100 calories more than if he had a picnic using his ‘averaged out’ EKM values. Once we became aware of this, knowing that he needed the calories, we had the option of using the exchange list or using EKM and punching in all the exchange list amounts that made the picnic meal and then working on those amounts to make the EKM meal.
We went on holiday, taking all the Liquigen with us and EKM was invaluable. Greg even went skiing with school for a week, taking all his meals ready frozen, we had to use dry ice to keep the meals frozen on the 24 hour coach journey.
We managed to wean Oxcarbazapine successfully, but the low dose of Lamotrigine Greg was still on was another story, after trying 3 times to wean, the last time ended in an hour, 20 minutes episode of status, we decided that Lamotrigine would have to stay!
Keppra, had been suggested to us on a few occasions and we felt if we didn’t try we would always wonder if it was the med for Greg. I must admit I was terrified that we may see the aggressive side effects and as it turned out, yes the aggression was horrendous, initially it seemed to be controlling the seizures but that was not lasting and my family already with an abundance of emotions going on (never a dull moment!) were constantly walking on eggshells, waiting for the next explosion. It proved to be a nightmare, even at school he was not his usual angelic self and the keppra had to go!!
We then tried to increase Lamotrigine, that however led to increased seizures and deterioration in behaviour.
Now came a time where fear and desperation set in, I started to feel that we should probably try weaning Greg off diet but I was terrified that if he came off he would not agree to go back on and that there was little chance that any other medication would be helpful. There was no way I was taking my family back to the pre diet days of multiple medications that was not life for any of us, more like existence!
So, we soldiered on…….
Fine tuning the diet for Greg in the last year proved frustrating, seizures increased and Greg became very lethargic. I tried increasing calories, decreasing calories, increasing protein, adjusting meal times, nothing made any difference.Finaly with a view to weaning off diet I increased carbohydrates, which seemed to be just what was needed. Greg had energy again and he grew like a weed!
Time to wean the diet
After 5 years Greg made the decision that he wanted to stop Keto. He was fed up with it, to be quite honest at that point I think we all were!
He was very sensible; we were due to go on holiday, so HE decided that we start weaning after the holiday.
We decided to go very slow. I was worried about calories because Greg is very active, so instead of swapping Liquigen for milk I increased his LCT fat and protein a little each week and gradually decreased the MCT alongside. Then more carbohydrate, less Liquigen, very slowly and a couple of times when seizures came We stopped for a couple of weeks until things settled down, much like any drug wean. Surprisingly low ketones remained over all this time until finally after 2 ½ months Greg caught a bug and came completely out of ketosis, that’s when I stopped the Liquigen completely, at the beginning of December 2008.
It was a very scary time, and for some time we were still very careful when it came to carbohydrates. Though Greg had been desperate to come off the diet, his autistic side was still fixed on having similar meals, so he still had regular balanced meals and mainly low GI carbohydrates. Seizures were no more than before although for a time when he had them they were stronger. This settled though.
In February 2009 we spent a fantastic week at Butlins with lots of other MF families.
That was the first time that I completely relaxed and allowed Greg to eat rather a lot of junk food, on the way back home Greg went into status lasting 1 ½ hours.
Here we are in 2010, 1 year since Greg weaned off the diet, Greg still has his regular balanced meals, some not unlike those he had on Keto! I find that although I try to keep the carbohydrate as low GI as possible, having allowed a few sweets etc on MCT, it is difficult then to say none, so I try to limit the sugar rush by balancing any sweets/cake etc with a meal.
One difficulty with Greg is change, having made all his meals for so long it is a struggle to try to make him more independent, making his own breakfast has actually happened twice this holidays so it will come!!
Greg also informed me that as diet coke has been an essential treat throughout the diet, not having it would be a punishment (not daft!) and indeed loosing a bottle of coke has been about the only thing holding any clout in our house, so we agreed that a 500ml bottle per day would be his, but could be lost for any physically aggressive behaviour.
I have been increasing Lamotrigine very, very slowly, Greg is still on a very low dose and I have an understanding with his consultant that any sign of increased aggression means we go no further, so far so good though, at the moment seizures are coming for a few weeks but then the gaps in between have got longer, so we will see!
We are most certainly in a far better place; I shudder to think how things would be now if we had carried on as we were pre diet. Greg is now 14, 5’ 8’’ a strong boy who loves sport, he trains with Oxted under 15’s at football, occasionally gets to play in a game, at least he is a part of it! He loves Man united, Disney, airports and wildlife as long as he doesn’t have to touch it! He now has a friend at school, that’s when they are not arguing!! He is growing up fast on the outside; the inside may take a little longer!
I have been so very lucky to have had Emma around the corner to support me throughout and have met so many incredible families, wonderful friends, not just for me but for the whole family.
Pre Diet Days and on Steriods
Our family life has improved so much now – all thanks to a diet and so when Emma asked me whether I would like to be involved with Matthews Friends, I had no hesitation in saying yes and was extremely pleased to take on the role as a Trustee and Assistant Co-ordinator of a very worthwhile charity.
Trustee and Assistant Co-ordinator – Matthews Friends