Josh (or ‘Spud’ as he is affectionally known as), officially started the Ketogenic Diet on December 6th 2014, a Saturday, I know this because after talking to my mam recently she says she remembers the first day he started because the change in him from day 1 was obvious.
School was the same on the Monday, I hadn’t told them he’d started the diet until I went to collect him at home time, his teacher pulled me aside before I had the chance to say anything and told me what a brilliant day he’d had, he was so ‘on the ball’, attentive and had had a fantastic day the likes of which they’d never seen before. I remember questioning the online group at that point and asking if it was right that we were seeing results this fast and being deeply suspicious it was just another honeymoon period. I was SO scared of getting my hopes up again.
From there we went from strength to strength, there were tweaks along the way and bumps in the road, at the start he’d had 10g of carbs for an evening meal which was causing issues so that had to be reduced. We weren’t seeing the seizure reduction we would have liked in the first couple of months, despite the obvious cognitive benefits, so MCT oil was added into his diet, it took time to work out what worked for him but every time the diet was tweaked, we saw an improvement.
One of the best memories I have of him is the first time my son argued back with a ‘but you said….’ I can’t even remember what I’d promised him but the fact he’s remembered something I’d said 5 minutes ago and was able argue for what he wanted had me in tears, he’d never been able to retain any information up until that point and this for me was when I first started to see my son underneath all the seizure activity.
He’s 5 years plus on the diet now, I can’t put into words how much it’s changed his life. The child I have now is NOTHING like the one I first walked into clinic with, the child whose hand I couldn’t let go of for even a second for his own safety, the child who talked at you but not to you because he wasn’t capable of holding a two way conversation.
I remember them doing a sort of interview at the first appointment before we were given a place on the program, they were making sure my expectations were reasonable and asked me what I wanted from keto, my list was so short, it had 2 things on it, one was toilet training (something he declared he was ready for two weeks after starting the diet!) and the other was seizure reduction.
Keto has given me so much more than what was on that wish list. It’s given me conversations and arguments I didn’t dare dream of, it’s given him progress and adaption, a working memory, the ability to think and reason, it’s given him some form of freedom and independence, it’s given him a quality of life I wouldn’t of dreamed possible at the start of this journey and it’s very literally been the making of him. I shall always be grateful for the ketogenic diet.
I have a video of him at an indoor rock climbing center, it’s one of my favorite moments in time with him because he’s stood at the bottom of that wall trying different footholds, different handholds, working out which way to go, trying different routes, seeing what worked best for him. I can see his brain working in that video, I can see all the progress he’d made up until that point and he continues to make to this day and at the end of that video he made it all the way to the top, he was so proud of himself, and that for me sums up what keto has done for him, it’s let him climb over all his obstacles and make it to the top.
Emma says: “We have known Kay and Spud for a good few years now at Matthew’s Friends and it is lovely to see the progress Spud has made. The piece of film that Kay refers to is on our website and can be found when you click on the following link and chose ‘Spuds story’.”