The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

The Ketogenic Diet - Week Two: Mixing feeds & making a mess



Keto Q & A (taken from a handout given to me by the Children’s Hospital)

How does the ketogenic diet work? When fasting or starving your body produces chemicals or ketones, which provide energy.  A high fat and low carbohydrate diet will also cause your body to produce ketones.  These ketones seem to have an antiepileptic effect in some people.  However the exact mechanism is not yet known and there may be more than one way that the diet works. 

How soon will we know if the diet is working? Some children improve within a week while others show a slower response and take up to 3 months to respond.  After this time, if sufficient ketones are being maintained and there have been no beneficial changes, the diet should be stopped.

Week One: Thursday 1st – Wednesday 7th March

#Ketogenicdiet tweets for the week:

Thursday 1st: Start of week 2 on #ketogenicdiet so far so good: up to 2 feeds a day, ketone levels still v.low and 0 seizures (shh don't tell H) #epilepsy

Sunday 4th: Day11 #ketogenicdiet H's ketones up to 1.8 which means we can start testing his blood twice a day. Ideal ketones are between 3-5 #epilepsy

Monday 5th: Day 12 on #ketogenicdiet starting to feel quite confident at doing finger prick blood tests. Good job as i'm doing it twice a day! #epilepsy

Tuesday 6th: #ketogenicdiet day 13 grisly boy. Not sure it's diet related but can't give calpol because of the carbs, medinol instead. #epilepsy

Wednesday 7th: #ketogenicdiet day14 up to 4feeds, attempting to make altogether. ketocal all over kitchen. lid undone when I shook it up. Oops. #epilepsy

Basic stats:

Taking four keto feeds a day out of a possible five.  H has five feeds a day through his NG tube.  His 5th feed is still his normal Nutrini milk.  We are looking to increase to 5 feeds before the weekend hopefully! Woo-hoo!

Ketone levels: Highest was 1.8 but they are mostly fluctuating from 0.4 – 1.4 (aiming for between 3 and 5).  Testing his blood twice a day now, once in the morning and once in the evening.  They are generally higher in the evening.

Number of seizures this week: 9 not great but not altogether unexpected either.  We’d had a good run to be honest.  You can read about the seizure monsterreturning here.

xxxxx

Few seizures this week, but since H isn’t “ketotic” yet (with ketones between 3 and 5) I’m not too disappointed.  It’s not an indicator that the diet isn’t working – as pointed out in the quote above, it can take up to three months for changes to take place.  His ketones have been a bit erratic, but we’re not up to five feeds a day yet so that’s nothing to be too concerned about either.  Finding it easier to test his blood now, which I’m doing twice a day and it doesn’t bother H at all which makes it a lot easier.

Mixing the feeds takes a bit of organisation but I’m getting there I think.  Little H is NG fed; if he was fed orally it would be a lot more complicated weighing ingredients and calculating ratios; as it stands, it’s a bit like mixing baby formula.  And as pointed out by the charity Matthew’sFriends preparing the food is much easier than watching your child have seizures. 

For one feed of 140ml I need to mix:
§  8 scoops of maxijul (liquid carbohydrate)
§  130ml of ketocal 4:1LQ (A nutritionally complete, ready-to-feed ketogenic formula in a 4:1 ratio (fat:carbohydrate + protein) for the dietary management of intractable epilepsy; designed for individuals over the age of one year. A medical food)
§  70ml cooled boiled water

Obviously this makes 200ml in total, of which H uses 140ml for his feed.

I’ve started making the feed first thing in the morning.  He’s been having his Nutrini for the 6:30 am feed.  I freshly fill and boil the kettle first thing in the morning so that it is cooled ready to make the ketgenic feeds up for the day.  When he is up to 5 full feeds a day, this will need to be rearranged as I’d to be up at crazy-o’clock mixing formula for the 6:30 feed.  No thanks!  It keeps for 24 hours in the fridge anyway so I can always make the feeds each night before bed instead. 

The dietician said I could make up 4 (eventually 5) individual feeds (as above) or combine them.  It seems easier to mix up all the feeds for the 24 hours in one go. 

The ‘super’ soluble maxijul isn’t quite as soluble as it claims so that takes a bit of mixing.  Had a bit of a disaster this morning when I tried to mix it by shaking it vigorously but the lid wasn’t on: Ketocal all over the kitchen floor! Nice!

xxxxx

That’s all for this week.  Have a good week.

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