Ketogenic diet – end of a chapter

You may have guessed from the title, but Samuel will be coming off the Ketogenic diet. He’s been on it since April 2012 and while we’ve had lots of ups and downs with it, we always had the hope that it would really help Samuel. But his weight is starting to stall, he’s not gaining and his poos are looking very yellowy (he is not absorbing his fats, they are coming out in his nappies) like they did last year prior to him losing a lot of weight and us moving over to the Plan B version. There is no Plan C version.

I don’t want to wait until he starts losing a lot of weight before we come off. We need to act now.

Do no harm is the first rule of medicine and care after all.

We aren’t convinced that the diet is helping him now and it certainly isn’t giving him any help during his current wean off/wean on plan.

So Samuel will be coming off the diet. In order to do so we will have to increase the carbohydrates in the diet until they are at a sufficient level for him to move over to a new feed. The wean off will start this week and the dietician has given us a plan to work to.

We feel very disappointed that it didn’t work. We so, so wanted it to work. Plus we might find that we have to replace the diet with a new drug, which I would like to avoid if possible – the diet is counted as a drug – but Samuel will tell us what he needs in due course.

But a new chapter begins. And there are positives for coming off the diet:

  1. Samuel will be able to come off Potassium Citrate (used to prevent kidney stones which can occur when on this diet) and his vitamin supplement (as the new diet will have sufficient vitamins for him).
  2. We will be able to resume sensory tasters – as Sam’s diet is so strict and carb and sugar free, we’ve not been able to give him anything to taste at all (Samuel cannot take feed or medicines orally, but he can have small amounts of food & flavours put on his lips for him to taste). The only thing he has to taste is when he has a suck of his paracetamol syringe and his vitamins syringe as they both taste fruity (but are ok on the diet). But when he is off the diet, we can explore tastes and textures with him.
  3. A new ‘all in one feed’ will be so much easier and quicker for us to make up. Well we will just be pouring it into a feed bottle whereas currently to make a feed, it takes a bit more effort:
  • 54 mls liquid Ketocal
  • 15 mls Liquigen
  • 3 mls of Maxijul (scoop of Maxijul, add 4mls water then use 3mls)
  • 7g Carbohydrate-free mix (add enough water to mix into a smooth paste)
  • Add water to make a total feed of 220mls

So yes it is the end of a chapter, but we are ready to move on and looking ahead positively. It is just the start of an exciting new one after all…

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One thought on “Ketogenic diet – end of a chapter

  1. Thank you for your update, always great to hear from you but never feel pressured to blog. When you fancy it do so and if not – don’t – well always be here when you do so there’s no pressure! Will be rooting for Samuel with the new medication and coming off the diet – an all in one feed ey- what will you do with all that extra time in the morning?!! Take care and love to Samuel x x x x x

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