Harry’s story

In August 2014 our beautiful, healthy 4 month old baby boy, started having seizures. There followed a terrifying month of hospitals, brain scans, MRIs, lumber punctures, blood tests and fear beyond anything we could ever have imagined.

When the diagnosis of Glut 1 Deficiency Syndrome finally came, it was something we had never heard of before. With the support of the dietician at St George’s Hospital, at five months old our little man started the ketogenic diet on a 2:1 ratio.

The transformation was immediate. Pre-diet he tended to stare blankly off into space, didn’t make eye contact, was extremely floppy to hold and was having upwards of 100 myoclonic seizures a day together with some absence seizures. Overnight his seizures stopped and he is now a happy, lively, alert 2 year old. He has recently started to take his first independent steps and he has a limited but growing vocabulary – his animal sounds are pretty impressive, particularly his roaring and neighing! We receive regular support from an NHS physiotherapist and speech and language therapist and both they and the development paediatrician are really pleased with his progress.

We were very lucky that he was diagnosed so young. For the first five months of his life, until we started the ketogenic diet, his brain wasn’t being fed so it does feel like he is a few months behind on his development compared to his friends. BUT crucially that gap doesn’t feel to be widening, and whilst five months behind might seem a lot at this age, it hopefully won’t when he reaches school age.

Harry’s first MRI scan on diagnosis also revealed abnormal white matter in the front of his brain. This was a huge source of anxiety to us for many months, as it
could have meant he had an additional white matter disorder.

However, his repeat MRI four months after starting the diet showed that the abnormal white matter was reducing and improving. The expectation is that it will continue to improve and hopefully disappear completely – this is something our doctors had never seen before with Glut 1 patients and it is real proof of how the ketogenic diet is benefiting his brain.

When we started the diet there didn’t seem to be many babies on it, so finding inspiration for baby food keto recipes was tough. Mo from Matthew’s Friends was amazing and I set up a blog at www.lastnightsomedairysavedmylife.com to chart my journey and hopefully help other families in the same situation. Now, almost two years on there are lots more babies starting the diet and there’s even a weaning recipe book from Nutricia which is great progress!

Harry enjoys his food, with Mo’s bread, garlic mushrooms, celeriac and kale ‘potato’ cakes, bacon crustless quiche, tuna & avocado balls, olives and fishy-cakes his particular favourites.