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 Ketocal kid

The Ketocal Kid?  That's Little H that is! 

He has currently swapped his 5 feeds a day of nutrini mulitifibre 'a nutritionally complete tube feed for the dietry management of disease related malnutrition' 

 for ketocal  'a very high fat, low carbohydrate, nutritionally complete vanilla flavoured liquid product'

The Ketogenic Diet is a high fat, low carbohydrate diet used in the treatment of difficult to control epilepsy.  Little H definitely has what you'd call 'difficult to control' or 'complex' epilepsy.  His seizures are life threatening and have scared the life out of me repeatedly.  I have had to resuscitate him more times than I'd care to imagine, the most terrifying of which was at the side of a dual carriageway.  You can read more about H's epilepsy in this post: Six months on from an epilepsy diagnosis  

When medication after medication failed to control H's epilepsy, his neurologist decided to try him on the ketogenic diet.  A brilliant website and charity providing lots of useful information about the ketogenic diet is Matthew's Friends.  Have a look if you want to find out more.  

I am using this online diary to chart Little H's progress on the diet as a reminder to myself, but also in the hope that it may help others starting the diet to know what to expect.  You can either click on the links to the individual posts below, click here or follow the 'ketogenic diet' link under the labels near the top right hand side of the page.  

Blogs Posts on the Ketogenic Diet:

You can read about Little H's friend Sam who is also starting the ketogenic diet here: Samuel's Ketogenic Diet Diary