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…

The ketogenic diet: Week Three - prescription panics

Some more Frequently Asked Questions about the ketogenic diet & epilepsy:
Original source:

When should the diet be considered?
Approximately 70% of children who develop epilepsy will respond to pharmacologic treatment but about 30% will develop difficult to control seizures or experience ill-effects from antiseizure medication. These are the children that may benefit from dietary therapies. A consensus report from a panel of 26 pediatric epilepsy specialists and dietitians concluded that “the ketogenic diet should be strongly considered in a child who failed two to three anticonvulsant therapies, regardless of age or gender, and particularly in those with symptomatic generalized epilepsies” (Epilepsia 2008). In addition, the group recommends using diet therapy early in a child’s life when diet is easier to control.

Who can be helped by the diet?
Children with epilepsy from infancy through adulthood may be helped by the diet. The published reviews and studies on the diet consistently show that 50-75% of children with difficult to control seizures of all types are helped by the diet. Some children, especially those over the age of 5 years may find the diet difficult to follow due to its strictness. Creative recipes and more liberal ratios have helped to make the diet more enjoyable.

Week Three: Thursday 8th – Wednesday 14th March (days 15-21)

#Ketogenicdiet tweets for the week:

Thursday 8th : Today's the start of week 3 on the #ketogenicdiet. Hoping to reach full feeds by weekend. H tolerating feeds well so far. #epilepsy

Friday 9th: Day 23#ketogenicdiet up to full feeds! :D

Tuesday 13th: #ketogenicdiet day 20, having regular contact with dietician. Reducing maxijul (carbs) to try & increase ketone levels. #epilepsy

Wednesday 14th: #ketogenicdiet day 21: highest ketones so far-2.3. yay! Getting there :D

Ooops – obviously got a bit mixed up with days there!

Basic stats:

Taking all keto feeds now, no more Nutrini (for now anyway). 

Ketone levels: Highest was 2.3 but they are still just below 1 (aiming for between 3 and 5).  Using less maxijul now to try and get his ketone levels up.

Number of seizures this week: 0 (shhh!!!)


Diet still going well.  Seizure free again this week but since his ketones are still so low it can’t really be attributed to the diet. Not sure why he’s having such a good patch recently, but it’s great.  He’s had a few lovely comments this week about how much more alert and vocal he is lately, people are beginning to see a real difference in him.  I don’t know if that is to do with the diet, the lack of seizures or just the next stage in his development.  Either way, it is lovely to hear and see.

I’m mixing the feeds up later in the day now and doing 1litre which covers 24hours worth of feeds (5 bolus feeds via his NG tube).  It needs to be kept in the frudge and I worry that it’ll be cold when I come to feed him but he doesn’t seem to mind.  If I remember, I take it out of the fridge for a wee while before his feed is due, but I usually forget. 

I’ve discovered a clever (well I thought it was) way of ensuring that the ‘super soluble’ (yeah right) maxijul is easier to mix – add the ketocal first.  Oh, was that the obvious solution?!!!  The instructions I was given clearly stated to measure out the scoops of maxijul first then add the ketocal – but this left a load of powder in the bottom that only vigorous shaking and poking and prodding and more shaking – sometimes with disastrous consequences - could dissolve.  So by adding the ketocal into the bottle first, the powder doesn’t get the chance to hide in all the little nooks and crannys and with a quick shake it’s gone.  Ta-dah!  Not just a pretty face, see? (OK, not even a pretty face).

Nutricia delivery is due tomorrow and after the ridiculous palaver we had with the GP sending/not sending/losing/lying about the prescription for the ketocal, I was delighted to find out that the prescription had finally arrived and was safe in the hands of the guys at Nutricia Homeward.  Panic over. 

Not quite. 

The team at Nutricia rang today to say that they’ve run out of ketocal!!!! Aargh. Our dietician is on leave until Monday, I have enough ketocal to last until Saturday, the delivery (minus the ketocal) arrives tomorrow and it’ll be the end of next week at the earliest before they can dispatch the ketocal!!!  Lots of phonecalls and faffing later and Mr. M is going to collect some ketocal from the hospital tomorrow instead.  Phew!


So that’s it for this week. Fingers crossed we’ll get some ketocal and can get those ketone levels up up up!


  1. Hope it continues to go well - I only know one other person on this but so far they have been pleased with the results. Keep up the good work x


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