A case study highlighting the versatility of using K.Yo in an oral ketogenic diet and as an enteral tube feed for a complex patient with tuberous sclerosis, epilepsy and autism whilst dealing with the associated challenges with adhering to a ketogenic diet.
The patient is a 13 year old male with tuberous sclerosis complex and epilepsy who lives with his mum, dad and older sister.
Autistic spectrum disorder, polycystic kidney disease, hypertension, hyperlipidaemia (pre-ketogenic diet), IBS.
Medications: Polypharmacy due to complex medical situation.
Height: Approx. 75th centile.
Weight history: 50th-75th centile whilst on his ketogenic diet however, in April 2021:
Optimise ketosis whilst meeting nutritional requirements and personal needs.
|Minimum safe protein||0.9g/kg = 50.4g/d|
|Fluid requirements||2200ml/d (100 x 10=1000ml,
50 x 10 = 500ml, 20 x 36 = 720ml)
Advice on using K.Yo as an enteral tube feed were provided to Mum for times when her son was unable to or unwilling to eat and drink orally:
Pour a minimum of 120ml of water into a feeding container or jug.
Add a pot of K.Yo
Stir until evenly mixed in the water.
Suitable for bolus feeding via gravity, syringe and feeding pump.
Use within 4 hours.
Flush with a minimum or 10 ml of water after feeding.
Seen in keto clinic every 6 months with routine blood tests and regular telephone/email reviews between Mum and the dietitian in between to monitor weight, ketosis and overall compliance.
Patient usually has 1 pot of K.Yo a day - he really loves it and generally takes it well orally. There are times when he is off his food if unwell, or struggling with IBS symptoms and he may take more K.Yo orally at these times in place of other food.
Really useful if he has a planned/unplanned hospital admission. Hospital catering struggles to meet his needs at short notice, and if Mum has not had the opportunity to prepare meals ahead it's a convenient option to bring in. Mum cooks and prepares most meals and snacks for her son at the time, rather than in advance.
Having the flexibility of using K.Yo via a PEG enables Mum to be confident that even if he is unwell she only needs to take a certain amount of his feed and K.Yo with her if away from home or if he is off his food. He rarely refuses his K.Yo as he loves the taste, but it helps Mum relax to know there is an alternative if he won’t take it orally, that she can give it via his PEG - meaning she’s not needing to take extra feed ‘just in case’.
A reassuring back up option at respite as he may be more prone to food refusal there, which causes anxiety amongst the staff caring for him, as they appreciate the importance of complying with his diet - so it’s great for them to be able to give the K.Yo via PEG in that situation where they haven’t easily got another option if he’s refusing a meal/snack with them.