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 6 - Shake it shake it baby!

Week Six: Thursday 29th March – Wednesday 4th April (days 36 – 42)

Side Effects of the Ketogenic Diet

What are the most common side effects of the Classical Ketogenic Diet?
Answered by: Dr. Elizabeth Neal RD
Constipation is by far the most common side effect of the Ketogenic diet. Many foods which are naturally high in fibre are restricted on the Ketogenic diet, high fat diets can also slow down bowel function. This effect can be worsened if the child is fluid restricted.  This is usually resolved by ensuring adequate fluid intake, introducing a fibre supplement which is suitable on the ketogenic diet or by using a form of suitable Laxative, the Ketogenic team can advise on the best treatments for each child.
When initiating Ketogenic diet there is a risk of Hypoglycaemia (low blood sugars) and Acidosis (increased acid levels in blood), this is more of a risk if the child is fasted prior to introducing Ketogenic meals. At initiation your child would be monitored closely and treated if necessary.

#Ketogenicdiet tweets for the week:

Sunday 1st April: Day 39 #ketogenicdiet H's ketones have been consistently high! :D wondering if the diet is why he has been so alert &happy lately #epilepsy
Monday 2nd April: #ketogenicdiet day 40 ketones dropped again this morning. :( don't know if its just a blip or whether will need to adjust maxijul again.
Wednesday 4th April: #ketogenicdiet day42 dietician thinks erratic ketones (0.8 this morn!) due to pain med for teething. Drop maxijul when using them #epilepsy


Little H’s ketones have been really eratic this week wit the highest being 4.2 and the lowest (this morning) at 0.8.  The dietician thinks that this may be due to the pain relief we have giving intermittently for his teething which really has been causing H to become quite cranky and irritable.  He’s been having Medinol – as advised by the dietician as it’s lower in carbs than Calpol – and ibuprofen at times too.  We are still using 4 scoops (1g each) of maxijul in each feed so the dietician wants me to reduce the amount of maxijul we use when giving medicine.  I’ve been making up H’s feeds for the full day (1litre in total) so will have to rethink how I organise this.  For tomorrow I have mixed the ketocal and the water for the full five feeds and am planning to decant 200ml for each feed and add the maxijul as I go along instead.  Will see how this works – especially as I am planning to pop out and meet a friend tomorrow.  I am sceptical that the ‘super soluble’ maxijul will mix well if the liquid is cold, straight from the fridge.  I may need to sieve it.  Hmmm – might be worth adding the maxijul before we leave the house then!

Remember the difficulty we have had in getting the ketocal and how we had to get a whole pile of it from the hospital instead?  Well, the stock we got from the hospital is about to go out of date! Ooops.  Luckily, we have enough in-date stock to last us until next week’s delivery from Nutricia Homeward.  I am wondering if the fact that it’s so close to its use by date  explains why the ketocal is particularly lumpy and yoghurt like?  It’s a bit like that anyway but usually a bit of a shake will sort it.  Not these ones though!  Cheeky is loving joining in with the shaking though.  I just have to make sure the lid is on carefully, ha ha.