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:
- The End of Winter: The start of the diet and all the hope and the promises it brings.
- The Story Begins: Summary of week one, information about the diet and testing blood.
- Mixing Feeds & Making a Mess: Summary of week two, how the diet works and how we mix Little H's feeds.
- Prescription Panics: Summary of week three, who the diet may work for and a faff trying to get the Ketocal delivered.
- Poorly Boy: Summary of week four, information about tube feeding on the ketogenic diet, worries about how to cope with the feed if H is in hospital.
- Can Daddy Cope Alone?: Summary of week five and Daddy manages by himself.
- Shake It, Shake It Baby: Summary of week six, side effects of the diet, adjusting the diet because of pain relief for Little H and erratic ketones.
- The One Where We Meet the Epilepsy Specialist Nurse (at last): Summary of week seven and a very disappointing meeting with the epilepsy specialist nurse.
- Feel Good Friday: 9 Weeks and Counting: 9 beautiful, wonderful, seizure-free weeks! Need I say more?
- The End of the Three Month Trial Period: A round up of the first three months and a reflection on the 'dark days of epilepsy'.
- How the ketogenic diet saved my life/sanity: An update on the last ten (yes ten - OK, I left it a long time) months.
- The Birthday Boy: A reflection on the changes in H a year into the ketogenic diet and on the eve of his 3rd birthday
- The Price of Success: The difficulties with drug weaning when 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