Use of K.Vita in a child with Tuberous Sclerosis Complex (TSC) | Case study

This case study discusses a 10-year-old female with Tuberous Sclerosis Complex and drug-resistant epilepsy, who initially experienced significant seizure control with a modified medium-chain triglyceride ketogenic diet but faced challenges in maintaining it long-term.

Following a deterioration in seizure control after discontinuing the ketogenic diet, the patient was introduced to K.Vita. Using a multitherapy approach including the use of K.Vita resulted in a significant improvement in both the frequency and severity of seizures. 

Patient details and medical history 

Current age: 10 years of age.

Gender: Female.

Relevant family and social history: Lives with parents and older sibling. 

Diagnosis and relevant medical history

• Tuberous Sclerosis Complex (TSC) and drug-resistant epilepsy.

• Diagnosis of autism spectrum disorder (ASD).   

History before starting K.Vita

Focal seizures.

Absence seizures approximately ten times per day lasting up to 1 minute. 

Medications  

Levetiracetam and lamotrigine.  

Previous medications 

Vigabatrin, carbamazepine, sodium valproate. 

Dietetic Management 

Feeding route 

Oral, no feeding problems. 

Previous use of the ketogenic diet  

Referred initially for ketogenic diet therapy (KDT) after failure to respond to 5 different anti-seizure medications.  

Commenced on modified medium-chain triglyceride (MCT) ketogenic diet at 7 years of age. Tolerated this well for 2 years, maintaining good ketosis and improvements seen in seizure control and cognition.  

Focal seizures stopped, and absences reduced by 75-90%.

Despite the efficacy of the diet, her parents were keen to discontinue the KDT at almost 2 years as they felt she would struggle to maintain the diet long term, and she was finding it more challenging. Unfortunately, her seizures recurred once the ketogenic diet was discontinued. 

Reason for implementing K.Vita 

Deterioration in seizure control following discontinuation of KDT. 

Dietary Management with K.Vita 

Parents were advised to: 

Introduce K.Vita over a 6-week period* 

Aim for an initial K.Vita target amount of 120ml pack per day¹ (1 pack contains 371 kcal, providing 23% of her daily energy requirement* - daily estimated energy requirements = 1613 kcal per day²). 

Always take K.Vita with or after meals to aid tolerance.  

Avoid high-sugar foods in the diet, although the existing diet already had a low intake of refined sugars, so minimal adjustments were needed. 

*It was noted that the patient was sensitive to medium-chain triglycerides (MCT) and could only tolerate up to 30% of their calorie intake from MCT while on the ketogenic diet. To address parental concerns about potential gastrointestinal symptoms, the introduction of K.Vita was spread over 6 weeks. 

The patient followed the recommended introduction plan: 

No micronutrient supplement was required as there are no concerns regarding nutritional adequacy of the diet. 

Acceptability and tolerability of using K.Vita

The average daily amount taken is 120ml - 100% of the initial target amount.  

Moved to 40ml x 3 times daily to improve compliance and make administration easier.  Mild nausea and tummy aches were experienced occasionally within the first 3 months but did not require a change to the prescribed volume, as symptoms were inconsistent. Parents reported that symptoms may occur if K.Vita is taken without food. 

There was no change to the overall daily amount in the first year. We discussed the potential of increasing the amount to meet a higher proportion of daily calories, aiming for 35%, but parents were concerned the volume will be too much. 

Continued to follow a diet low in refined sugars, although parents have allowed treats at Christmas, Easter and Birthdays. 

K.Vita management during illness and hospital admission

On 2 occasions, K.Vita was omitted for 24-48 hours without deterioration in seizure control. 

Episode 1 was related to norovirus. K.Vita was stopped for 48 hours and then gradually re-introduced on day 1 – 50% of the daily amount and on day 2—the full amount. 

Episode 2 involved general anaesthesia. K.Vita was stopped for 24 hours for an MR scan under general anaesthetic. It was re-introduced more quickly, with a 50% of the daily amount at breakfast and full amount from then onwards. No gastrointestinal symptoms were reported, and seizure control remained the same. 

Anthropometry  

Before introducing K.Vita height and weight tracking on the 25th centile. 

Weight = 26.5kg pre K.Vita.

Weight = 32.5kg 1 year on K.Vita.

Outcomes 

Seizure management outcomes

After 3 months, parents reported a 50% improvement in absence seizures with reduced frequency to 3-5 daily and reduced length of time.  

After 6 months, there was a further 50-60% improvement in seizures, which now do not occur daily. Parents noted improved cognition and mood and reported improved learning and concentration at school.  

Conclusions and Key Learnings 

K.Vita has proven to be a suitable and effective alternative dietary management option for this patient, who faced difficulties in maintaining long-term compliance with the ketogenic diet's restrictions.

The patient has shown good compliance with K.Vita and has tolerated it well. According to the parents, using a multitherapy approach including the use of K.Vita resulted in a significant improvement in both the frequency and severity of seizures. Up to 50% of patients with a diagnosis of TSC may also have a diagnosis of ASD, which can make implementation and compliance with the ketogenic diet more challenging. K.Vita will provide suitable dietary therapy for this group of patients.  

Under the care of a clinician, K.Vita can be withheld during illness or in episodes of nil by mouth. K.Vita can then be re-introduced after 24-48 hours; re-introduction could be graded over the next 24 hours, but it may be possible to return to the usual amount immediately. 

For this patient, parents were able to see a benefit in seizures without having to return to the labour-intensive ketogenic diet and reported: 

‘K.Vita is perfect, if we had to do Keto again, we would, but it was so difficult for her. K.Vita means we don’t have to, it just fits in with our lives and has given us our daughter back again, we are so happy she got to try it.’