Raising a Super Tubie

Since he was 4 years old the Dude has been fed via tube directly into his stomach. For almost a decade we have cooked and blended food to give to our son. I cannot begin to tell you how resistant some of his clinicians were to us going down this route; in contrast, the support we have had from other members of his team has been phenomenal.

For us, deciding to try a blended diet with our son was based on the knowledge that he didn’t have any digestive issues; his problem was with his swallow. It is not suitable for everyone, definitely not if you are fed directly in the intestines. But for the Dude, it has been life changing… to quite a well regarding book on the subject, when you have to justify feeding someone real food you know you have a problem!

Being in full control of our boy’s diet has allowed us to tweak it to his specific needs.

We quickly noticed that if he had too much sugar in any form his seizures went off the charts. Sweeteners were like kryptonite for him, likewise dairy in any form caused horrendous stomach issues and vomiting. We noted that while he enjoyed tomato-based meals such as bolognaise, if he had too much tomato his seizures increased; coconut water was fine but coconut milk also increased seizure activity and reflux.

My diet notebook became my constant companion, apparently while you can take the scientist out of the lab you can’t stop her being a scientist entirely! A quick bit of reading revealed four foods which are frequently poorly tolerated – gluten, corn, dairy and wheat. I won’t go into the science, that’s for another day, but there was no doubt that removing these from the Dudes diet reduced his seizures enormously.

Back in October 2024 we took a chance and revisited the possibility of trying the Dude on a ketogenic diet to control his seizures.

I will admit, attempting to plan ketogenic diet meals for a child who cannot tolerate dairy is a challenge!

All those years of experience planning and blending his meals has come in handy, its incredible how quickly we’ve learnt which seeds and oils are the best to use, which vegetables are lowest in carbohydrates and how to add flavour to meals without affecting the carb:fat:protein ratio.

When the Dude first tried keto as a little one, the lack of fibre was a serious issue for him and was one of the principle reasons we stopped the diet. Older and wiser now, we add oat fibre to his blends – granted it looks rather like fine sawdust, is carb free and works wonders.

Ten years ago, when we were told our boy needed a feeding tube it felt like the end of the world. I couldn’t imagine his beautiful little belly with a tube inserted into it, now it would be odd seeing him without it. I will forever be grateful that such innovations exist, and that my very own Super Tubie has been able to thrive as a result