Hugo’s Story
‘Well, we wanted to try the diet. I am on my third attempt at making snacks and a bit frustrated and fed up’. That was five months ago but now we are delighted.
Hugo our middle child, has turned 3 and was diagnosed with TSC (Tuberous Sclerosis Complex) about 2 and a half years ago. The significant symptom has been seizures (focal, complex, infantile spasms etc!) and fortunately Hugo has not experienced any other problems so far.
Hugo has been on many drugs and many combinations and levels. Some have worked slightly better than others but they have all left him ‘spaced out’ and his development was slowed down.
Fortunately we heard about the Ketogenic diet from a friend and we were then lucky to get a place with a ‘Daisy Garland Charity’ funded dietitian.
We did not really feel that our doctors held much hope with it. Surgery was another possibility.
The diet was not a success straight away. The drugs were not helping matters so Hugo came off them as soon as possible (unpleasant in its self). We did wonder whether it was worth it.
Back to now, its still early days and we are learning. Many thanks to the latest Mathew’s Friends conference, and the contacts we’ve made generally. Hugo is doing amazingly well. Hugo has no seizures, alert, able to concentrate and is so much happier and able to be himself (good most of the time!). The last change we made was to remove high GI food from his diet, which we think helped to stop the last few night seizures. (But who knows!)
It’s a real journey getting the ‘diet’ right and possibly it may not the straight forward application of a formula. And I don’t think anyone has the complete answer yet for Hugo. But there are lots of people with a lot of good experience and good attitudes that can help. I think Hugo’s diet will change and may get less strict.
What does Hugo think of the diet? We are sure he misses tucking into chocolate and sweets etc but we do make quite appetising meals. And he can have some of his favorites such as quavers, rice crispies, and diet coke.