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: The story begins – Week One


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: #epilepsy day 1 #ketogenicdiet very very excited. Bit harder to get blood from H's tiny little fingers than I had anticipated.
Friday 24th: #ketogenicdiet day2. Bit fiddly mixing up the feed. Not difficult though- bit like making baby formula. Easy when yr used to it.
Sunday 26th: #ketogenicdiet day 4 - The ketocal drink smells a bit like cream soda. Doesn't taste too bad but is weird consistency.
Tuesday 28th: #epilepsy #ketogenicdiet day 6: moving up to 2 keto feeds a day. Yay! :D


Basic stats:
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

xxxxx

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!

xxxxx

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. 

Comments

  1. you're not prattling nonsense, you are doing what you think is best for little h (which is awesome!), you are increasing awareness and sharing your experience! all pretty fabulous really!

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  2. Thankyou for this. Given that Cameron is due to start this soon, it is very helpful to read about your experience.
    Sarah x

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  3. Thanks Ever Hopeful - I'll keep at it then! :D

    Hi Sarah Jane - that was part of the reason I decided to write this - I was finding it hard to get as much information in my 144 letters on twitter as I wanted and I know that you, and others, are hoping to start soon and thought this might help you see what to expect. If you have any questions, please do feel free to ask and I'll try and make sure I cover it. Although I guess bear in mind that Cameron's diet might be slightly different as there are different types of Keto diet. As far as I know, we're on the classical diet. Glad it's helpful and I'll keep you updated.
    Em x

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  4. Thank you so much for posting this. As I think you know we are hoping to start the ketogenic diet in early April, so it's fantastic to hear about your experiences.

    I also wanted to say a huge good luck with it. I really, really hope it is a success for Little H.

    I keep hearing positive stories about it so I'm really hopeful for it for Samuel, if it can make a tiny difference that would ne amazing. He has seizures every single day so even a slight change would be amazing. But I'm being cautious and keep reminding mysekf that it is not guaranted to work and after all he is a tricky customer.

    A great blog post Em, thanks so much for sharing. xx

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  5. My thoughts exactly Zoe, even a small difference would be great, though obviously hoping for completely seizure free! Imagine! I've heard lots of good things too but am continually reminded by the hospital that it's a 50% chance of some success (reduction in frequency/severity etc). Will keep you posted and look forward to hearing how your little Tricky Customer gets on with the diet. Hopefully there'll be a few more keto success stories between us all. xxx

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  6. I know a number of children with autism who have seizures and your experience of this diet would surely be of interest to them as well - perhaps you could collate the posts together later? I wish you the very best with it xx

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  7. It seems everyone has a different opinion of dieting and which diets really work versus the "short term weight loss" diets. By short term weight loss , this refers to the phenomena where every pound that was lost comes right back on due to sheer hunger after starving your body for so long. Starvation diets are definitely not the way to go, but there are some excellent lower calorie diets that will leave you far from starving - and keep the pounds off for a lifetime.

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