The use of K.Vita in a gastrostomy-fed child with drug-resistant epilepsy and cerebral palsy on a dairy-free blended diet | Case study

The case study discusses the use of K.Vita in a 15-year-old girl with drug-resistant epilepsy and cerebral palsy, who is fed via a gastrostomy tube and follows a dairy-free blended diet. Despite not reaching the target K.Vita intake due to hospital admissions and parental concerns, the family observed benefits such as shortened seizure events, reduced use of rescue medication, and increased alertness. 

Patient details and medical history  

Age: 15 years.

Gender: Female.

Family and social history: Lives at home with parents and younger brother. Attends special school. Receives ad hoc respite care. 

Diagnosis and relevant medical history 

• Generalised drug-resistant epilepsy.
• Severe hypoxic ischaemic encephalopathy at birth.
• Cerebral palsy, microcephaly, hip dysplasia, scoliosis and short stature.
• Poor lung health.
• Severe learning difficulties and visual impairment.
• Feeding difficulties, reflux and unsafe swallow.
• Percutaneous Endoscopic Gastrostomy (PEG) inserted at age 9 years.
• Reflux.
• Dairy intolerance (aggravates symptoms of reflux)

History before starting K.Vita

Average of 1-2 seizures monthly, occasionally requiring buccal rescue medicines, peaking to more than 5 seizures per month in Winter or during periods of intercurrent illness. 

Medications  

Clobazam, sodium valproate, baclofen, omeprazole, paediatric movicol, cholecalciferol. 

Dietetic management 

Feeding route  

Nil by mouth. 

PEG.

Enteral feed

Dairy-free blended diet including Paediasure Peptide and Paediatric Seravit. 

Previous use of the ketogenic diet

She was on the Classical Ketogenic Diet for two years (2019-2021) During this time, her seizure frequency reduced, and she was happier, more alert, interactive and smiley.  

To assess the impact on seizures when returning to a normal diet and to inform the next treatment plan, she was then weaned off the ketogenic diet slowly over five months before it was finally discontinued.   

Reasons for implementing K.Vita

Parents were interested in trying a less time-consuming and demanding option compared to a return to the ketogenic diet when her seizures returned. 

Dietary management with K.Vita

She continued with her usual blended diet. K.Vita was mixed into a feed four times daily and given via her PEG, which was flushed before and after with water.  

No alteration was made to the recipe to account for additional energy intake from K.Vita.  

No specific dietary advice was provided as her dairy-free blended diet was already naturally low in sugar. 

Due to a history of poor tolerance (notably, reflux) to products containing medium chain triglycerides (MCT) whilst on the ketogenic diet, a bespoke, slow introduction of K.Vita aiming for 120ml/day (4 x 30ml) was devised1.  

The plan started with 2.5ml of K.Vita daily, building up gradually by 2.5ml every two days. The expected time to achieve the target daily volume of 120ml (4 x 30ml) was 96 days (13 weeks and 5 days). 

Acceptability and tolerability of K.Vita

No adverse side effects from introducing K.Vita to her dairy-free blended diet were reported despite the previous history of worsening reflux whilst on the ketogenic diet, attributed to MCT.

16 months after starting K.Vita, the target amount had not been reached due to the plan being interrupted by three separate hospital admissions due to non-seizure-related intercurrent illness. Parental anxiety around MCT possibly aggravating her reflux symptoms also slowed the progression of K.Vita introduction. 

Currently, the amount of K.Vita given continues to increase. She is taking 20ml mixed into each of four blended feeds (80ml/day). Her parents are keen to continue gradually building up her daily volumes of K.Vita to the target amount of 120ml (4 x 30ml) to establish if larger amounts of K.Vita are beneficial or not. 

Anthropometry

Since introducing K.Vita to her dietary management plan her weight has dropped slightly from 37.1kg to 35.7kg (weight loss of 1.4kg (3.7%) in 17 months).  

Her BMI also dropped from 21.4kg/m² to 20.6kg/m² but remains on the 50th percentile. 

However, the accurate assessment of growth in children with neuro disabilities is challenging and should not be based only on the interpretation of weight and height data¹. ESPGHAN recommend considering various parameters, including biochemistry, body composition measurements and bone status, to complete the assessment. The latter two did not form part of routine care for our case study. However, due to receiving long-term, blended tube feeds via PEG, nutritional biochemistry (bone profile, vitamins A, D, E, B12, folate, Mg, Cu, ferritin and Hb, Zn, Se) was monitored and found to remain within acceptable ranges and unchanged over 12 months since starting K.Vita.  

We can, therefore, conclude that K.Vita did not appear to affect nutritional status or growth.

Outcomes 

The impact of K.Vita in this child with such a complex medical history and susceptibility to intercurrent illness and associated worsening of seizures has been challenging to assess. Overall, no reduction in seizure frequency has been achieved. The slow introduction of K.Vita (with the target volume yet to be reached after 17 months) has added to the challenge of establishing its effectiveness. Since starting K.Vita, she has been hospitalised three times with respiratory compromise comparable to the number of admissions in the year before starting K.Vita. 

However, her family have reported that from their perspective their daughter has benefitted from the inclusion of K.Vita in her diet, mainly in terms of a shortened seizure event and recovery, and a reduction in the use of buccal rescue medication. In addition, they report that she is more interactive and alert, albeit to a lesser extent than when following the ketogenic diet. 

Conclusions and key learnings 

• K.Vita has proven to be an appropriate dietary management option in this child with epilepsy and complex medical and feeding issues on a dairy-free diet as it is easy to give via a PEG and offers a simpler alternative to the ketogenic diet for parents and school to administer.
• Although K.Vita is typically introduced incrementally over four weeks to reach a target daily amount, in certain cases, a longer introduction period may be preferred to ensure a meaningful assessment of outcomes. For this patient, despite a prolonged introduction and not achieving the target intake, the family has observed some benefits to the patient’s seizure burden and quality of life. As a result, it has been decided to continue giving K.Vita.
• Due to this child’s complex medical history and needs, she may benefit from optimisation of her daily K.Vita intake to determine whether an increase leads to further improvement and if outcomes can be sustained during the Winter when her epilepsy typically deteriorates.
• In comparison to the ketogenic diet with its known side effects, there are fewer theoretical risks to a child’s growth and nutritional status associated with the use of K.Vita alongside their usual diet.
• From the perspective of the healthcare professional, K.Vita is less time-consuming to implement and monitor than the ketogenic diet and may offer an alternative dietary management option within a patient caseload and help reduce waiting lists.