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…

Lunch time, tubie style


It is lunch time and I have just fed my son a small bowl of purée.  He has some in his hair, lots on his face and there are splatters across the floor.  He has his fingers in his mouth feeling the food, then smearing it across his clothes and chair.  He enjoys the taste and the sensation and is impatient for more.  He takes a teeny tiny sip of water from the cup that I am holding.  Most of it dribbles down his chin and I suspect more saliva went into the cup than water came out, but some – perhaps a droplet or two, he manages to swallow.  I am delighted, close to tears with pride.  His older brother claps and cheers.  H smiles and dribbles some more.

This is not just any lunch ... this is the lunch of a tube fed boy!


Little H hasn’t always been tube fed.  He developed pneumonia after he was born and was tube fed my expressed breast milk for a few days but after that he fed orally.  It wasn’t quite as it should have been; he struggled to latch on (despite numerous attempts from breast feeding counsellors), he couldn’t really manage the bottle that well either – I’d have to hook his tongue out of the way then wiggle the teat around until he closed his mouth, he didn’t give eye contact at all, he vomited regularly all the time, he never seemed hungry and would sleep for hours and hours on end without crying for food.  I’d have to strip him completely naked and get him really cold just to wake him enough to take the bottle; then he’d fall straight back to sleep.  But despite the difficulties he gained weight at a reasonable rate.  Reflux, dairy intolerance, allergic reactions made finding a suitable milk difficult (I gave up the soul destroying task of expressing pathetic amounts of milk, to feed in a bottle, for him to puke the whole lot back up), and weaning didn’t start until he was about 10 months due to recurrent infections and hospital admissions.  It was slow progress, but by around 14 months Little H was managing basic baby purees – Ella’s kitchen was a huge favourite – and I was topping up with a couple of bottles of milk.  Not age appropriate I know, but pretty good all the same.

All that changed last summer when his epilepsy became completely unmanageable.  Drugs have never managed to control H’s epilepsy but last summer the amount and severity of seizures reached terrifying levels.  He spent the majority of time in the High Dependency Unit and we began getting recognised by the ambulance crew.  It was a horrible time.  The Paediatrician and the Neurologist made the decision to put him on an incredibly high dose of intravenous phenobarbitone in an attempt to break through the seizures.  Ordinarily drugs are introduced slowly – while being weaned off one drug, the next is introduced gradually.  But time was of the essence and H’s little body was pumped full of this powerful sedative whilst still taking treatment doses of nitrazepam and keppra.  That’s a lot of drugs for a poorly little boy to take. 

The effects were devastating but the alternative was much worse.  H was completely unresponsive.  He couldn’t move.  He couldn’t even open his eyes.  It was heart breaking. 

But he was alive.

I’m not sure what robbed H of his ability to feed orally – was it the drugs, the seizures or a combination of both?  Either way, from that point on, H was fed through a tube.

I assumed that the nasogastric tube (NG) was temporary.  Well, they told me it was temporary.  But I think my idea of temporary and their idea of temporary were a bit at odds.  I thought weeks.  They didn’t. 

A year later H is still tube fed, though his NG has been replaced with a peg which is less conspicuous and much safer.  Initially the idea of tube feeding really upset me but I realise now how useful it has been.  Even when H has been ill (which has been often), I can continue to feed him and more importantly get fluids into him, which in turn enables him to get better more quickly.  It has also made putting him on the ketogenic diet much easier (a diet to try and control his seizures – read more here).


The diet has had such positive improvements in H’s levels of alertness (I promise to do a proper update soon) and an unusual run of good health mean I think it’s time to start weaning again.  We have tried before but illness usually sets us back.  It may well do again, but thankfully H does enjoy his food which makes trying to wean him that much easier.  The difficulty this time is trying to find things that fit in with the ketogenic diet.  For now, I am trying Ella’s kitchen mixed with double cream!!!  Since he is having such small amounts it is having no effect on his ketones, however if/when his appetite improves and he is managing more than tasters I will have to be more careful what I feed him.  Time for me to do a little research I think.  But any advice on weaning tube fed children who are on the ketogenic diet would be greatly appreciated.

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