As many of you may know, Little H has started the ketogenic diet in an attempt to control his epilepsy after 5 different anti-epileptic medications have failed. I know a number of people are considering starting the diet in the near future with their little ones and others that might be interested, so thought I’d share my experiences in a weekly diary-style format. For those not familiar with the ketogenic diet here’s a brief outline taken from www.matthewsfriends.org which is an amazing website full of information and support for anyone interested in the diet and finding out more.
“The ketogenic diet, a high fat diet designed to mimic starvation, has been used for the treatment of epilepsy for over eighty years. Although used widely initially, use became less widespread with the development of antiepileptic drugs, but with the awareness that medication may not work, and indeed the profile of their possible side effects, use of the diet has again become prominent. Many of the children with seizures resistant to medication may benefit from the ketogenic diet.”
Week One: Thursday 23rd – Wednesday 29th February
#Ketogenicdiet tweets for the week:
Thursday 23rd: day 1 very very excited. Bit harder to get blood from H's tiny little fingers than I had anticipated.
Friday 24th: day2. Bit fiddly mixing up the feed. Not difficult though- bit like making baby formula. Easy when yr used to it.
Sunday 26th: day 4 - The ketocal drink smells a bit like cream soda. Doesn't taste too bad but is weird consistency.
Taking two keto feeds a day out of a possible 5 (other feeds still his normal Nutrini, gradually increasing the feeds over the course of the first two weeks)
Ketone levels: 0.1 (aiming for between 3 and 5)
Number of seizures this week: 0 :D
Was very excited to be starting the diet at last. We’d had to put it off for a couple of weeks as H was ill and in hospital. Wasn’t quite as organised as I’d thought and discovered I’d not got my prescription of ketone testing strips yet so there was a mad panic to get that organised. Our pharmacist was brilliant as usual. Our Doctors surgery always like to make things that extra little bit complicated and can’t seem to work out how to prescribe the ketocal drinks he needs and then send the prescription to Homeward who will deliver our supply once a month. It shouldn’t require this many phonecalls or so much work, but that’s our surgery for you!
Taking blood from Little H’s fingers was slightly more fiddly than I had anticipated. I’m not squeamish about it and it doesn’t bother him at all, it would just be a lot easier if I had at least two more hands! It’s just a finger prick and then the blood is used to test his ketone levels and then his blood sugar levels once a day. When his ketones are high enough I will move to testing twice a day.
The feeds themselves aren’t difficult to make up. It reminds me of mixing baby formula – it’s easy once you’re in the habit of doing it but when you first start out you have to do everything step by step. I need cooled boiled water, maxijul powder and his ketocal drink for each feed. Have to remember to switch the kettle on in advance of making the feed!
So that’s a snippet from our first week on the ketogenic diet. I’ll try and post every week and keep you all updated and I’ll get organised and add some photos in too. Hope at least one person has found that useful and it’s not just me prattling nonsense into the ether.