Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

Ketogenic diet: Week 4 -poorly boy

The ketogenic diet: Week Four


The initial option for tube fed babies/children is usually Ketocal.

This is a powder formula feed made in a ketogenic ration of 4:1. It is incredibly simple to use and actually is no more difficult that making a baby formula milk.  Various other things can be added to the Ketocal to change the ratio or to ease common symptoms of the diet like constipation.

Any addition to the feed will affect the ratio, so it is very important that if you are giving you child a fibre supplement of any sort that you inform your dietician so as they can adjust your recipe accordingly.

For children that have more complex feeding problems/intolerances there is a modular version of the feed where components are partially digested (or broken down) into their simplest form. This means that the tummy has to work less hard to digest the feed.

Modular feeds are made up of the same basic nutrients as Ketocal but as separate components of fat , carbohydrate , protein ,minerals ,electrolytes and water. There are many types of products which provide these components eg. Maxijul is a carbohydrate powder often used in such feeds.

An experienced dietician will chose the individual products from the range available to make up a feed tailored to each child's individual requirements. Each of the components can be individually manipulated to suit the child's specific needs.

The recipes often have as many as 8 ingredients all need to be carefully weighed and measured.  Making up such a feed requires painstaking accuracy and care.

Week Four: Thursday 15th – Wednesday 21st March (days 22-28)

#Ketogenicdiet tweets for the week:

19th March: #ketogenicdiet day 26 ketones still low-dropping maxijul to 5scoops. Poorly boy here, use medinol to keep temp down-has low carbs #epilepsy

Bit rubbish at the ketogenic tweets this week then!

Basic stats:

Ketone levels: Highest was 2.7 but they are still just below 1 (aiming for between 3 and 5).  Using just 5 scoops of maxijul now to try and get his ketone levels up.  Come on Hugh!!!


Poorly boy this week so bit rubbish at tweeting.  Also explains the very delayed update.  Biggest worry this week was how we’d manage the keto feed if he got admitted to hospital – a distinct possibility on the Monday.  Luckily, with a lot of hard work on our part we managed to keep him at home but the question remains – if (or more likely when) he gets admitted to hospital whilst on the keto diet how will we manage it?  We currently mix up a full days feeds in two 500ml containers which we keep in the fridge until we need them.  Under normal cirmustances, in hospital, the nurses provide us with the Nutrini, pump, giving sets etc – all the paraphernalia needed for a tube feed.  They won’t however be able to provide our ketogenic feeds.  I assume then, that each day before work, Mr. M will have to make up the feeds and drop them to the hospital for them to keep in the fridge.  This is going to be a bit tricky.  Less tricky though, I imagine, than if I had to prepare ‘real’ food.  Still, it’s something I’d not thought of until now.  He’s booked in for his gastrostomy in June, but this is at the Children’s hospital, not the local hospital we normally go to when he is ill.  It is under the consultant and dietician at the Children’s hospital that we are doing the keto diet so I wonder if it will be easier to organise when he is admitted there?  I don’t know – but it is something I will ask the dietician when I am next talking to her.

As an aside, the support from the dieticians is amazing – I speak to them at least twice a week and they are always at the end of the phone if needed.

Apologies for the late update.  Next week’s will be late too I imagine, since I’m taking Cheeky away for a few days.  I did suggest to Mr. M that he write the next update and tweet on my behalf, but if you knew Mr. M you’d realise just how laughable a suggestion that is!  So it’ll all be quiet here for a few days but I’ll update on my return.