Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.

My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

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