The use of K.Flo for an established gastrostomy-fed ketogenic patient | Case Study
DESCRIPTION
A case study highlighting some of the key benefits of using K.Flo as an enteral tube feed as part of a ketogenic diet.
The patient is an 18 year old female who lives at home with parents and older siblings. She attends a school for children with special educational needs and has regular respite.
Diagnosis
Severe drug resistant epilepsy, secondary to pneumococcal meningitis in infancy. Constipation.
Relevant medical history
Prior to commencing a ketogenic diet (KD), the patient had daily seizures including generalised tonic clonic seizures, tonic seizures, atonic seizures and absences.
At the age of 14 years old, she was commenced on a 4:1 classical KD via a gastrostomy. She had been fully gastrostomy fed for many years due to a reduced oral intake and poor weight gain.
Medications
Previously tried medication: Clobazam, Clonazepam, Sodium Valproate, Lamotrigine, Carbamazepine, Topiramate, Rufinamide
Current medication: Levetiracetam liquid 7.5ml bd and Laxido - 2 sachets per day.
- Reduce seizure frequency
- Improve quality of Life
She had a good response with seizure control continually improving throughout her first two years on the KD. She achieved periods of seizure freedom and was much more alert and brighter on the diet.
She maintained a good level of ketosis and it was noted that if her ketones were high, her seizure control was better.
After 2 years, and in a period of relative stability and good seizure control, a wean off KD was attempted. Unfortunately, on reducing the ratio of feed to 2.5:1, her status was deemed much worse and the feed ratio was increased back up to 4:1. Ketones increased again up to 4-5mmol/l and the patient was clinically much improved, she was still having daily seizures but they were not as severe and long lasting.
After 4 years on KD, the patient participated in the K.Flo clinical trial. At this point she was having 2 - 3 tonic clonic seizures per day and was on the waiting list for vagal nerve stimulation (VNS) therapy.
Ketogenic diet prescribed
Classical 4:1 ratio
Dietary goals
- Ensure a good level of ketosis is maintained
- To achieve as high an intake of protein as possible within KD restriction
- To meet micronutrient requirement
| Nutritional requirements | |
|---|---|
| Weight | 50kg |
| Daily estimated energy requirements (EER)1 | 1410kcal/d* |
| Protein (RNI)2 | 45.4g/d |
| Minimum safe level of protein (0.82g protein/kg/day)3 | 41.1g/d |
| Fluid requirements4 | 1800ml/24hrs |
*calculated using low physical activity level factor
Tube feeding plan before the K.Flo trial
Feed: Proprietary ketogenic 4:1 liquid feed
Target Feed Volume: 940ml/24hrs
- Daytime: 2 x 235ml bolus feeds - pump rate at 250ml/hr**
- Overnight 470ml - pump rate at 75ml/hr** **Feed times and rates were flexible according to tolerance
| Feed plan provided: | |
|---|---|
| Energy | 1410kcal/d |
| Protein (0.58g /kg/day) | 29g/d (70% min safe level of protein) |
| Fibre | 10.5g/d |
| Fluid | 1800ml*** |
***Target fluid intake was achieved with regular 60ml of water flushes throughout the day and before and after each feed.
Due to the patient’s low energy requirements and need for a high ratio feed, it had been an ongoing challenge to achieve the minimum safe level of protein. It was not possible to meet the patient’s minimum safe protein intake whilst maintaining a 4:1 ratio, without dramatically increasing energy (kcal) and her weight had already increased significantly prior to starting the trial.
Tube feeding plan during the K.Flo trial
Direct swap from proprietary ketogenic 4:1 liquid feed to K.Flo
Target feed volume: As above - 940ml/24rs
| K.Flo feed plan provided: | |
|---|---|
| Energy | 1410kcal/d |
| Protein (0.64g /kg/day) | 32g/d (78% min safe level of protein) |
| Fibre | 13.2g/d |
| Fluid | 1800ml |
The protein intake was still suboptimal and did not meet the patient’s minimum safe level of protein, however, it was reassuring that K.Flo pushed her protein intake in the right direction and both the pre trial feed and K.Flo met the UK reference nutrient intake (RNI) for all micronutrients.
Anthropometry:
Weight: On starting trial: 50.1kg (between the 9th and 25th centile)5. Unfortunately, no further weight was obtained at the end of the 1 month trial as the family were unable to get the patient weighed due to Covid-19 restrictions. Her weight 1 year later was 51.4kg which remained between the 9th and 25th centile.
Biochemistry:
Patient maintained a good level of ketosis for the duration that they were on K.Flo with ketones consistently 4+mmol/l. Six monthly routine keto bloods were all acceptable and not of concern before the K.Flo trial and for the duration that the patient was on K.Flo.
For the duration of the trial, the patient had a period of stability. Her seizure control did not change and there was no change to her anti-epileptics during the trial period.
The patient has always suffered from constipation. Prior to starting the K.Flo trial, she was on a daily laxative, Laxido, to help maintain a regular bowel movement and this was reduced to 2-3 times per week.
During the trial her parents noted that the need for daily Laxido reduced and they attributed this from swapping to K.Flo. K.Flo contains more fibre# than the pre-trial proprietary ketogenic feed, increasing total fibre from 10.5g to 13.2g fibre per day.
The patient adhered to the use of K.Flo for the duration of the trial. She maintained a good level of ketosis and no change was noted in seizure activity. Her parents were keen to continue K.Flo as the benefit to her bowel health was maintained, her bowels opened much better and she required less Laxido.
The patient remained on K.Flo after the completion of the 4 week trial period
- K.Flo is well tolerated, and it is reassuring the patient saw no change in ketones or seizures for the duration that they were on the trial.
- The slightly higher protein content of this feed can be useful to help meet the protein requirement of those patients who have very low energy requirements.
- The increased fibre intake and the IS50 fibre blend may help with the management of constipation. This patient had always struggled with constipation and this was exacerbated whilst on a KD. Mum reported a significant improvement in bowel movements after swapping from her pre-trial KD feed to K.Flo and she was able to reduce the quantity of Laxido.
- Parents also liked that there was an alternative ketogenic feed available.
- Scientific Advisory Committee on Nutrition. Dietary Reference Values for Energy. TSO, London, 2011.
- Dietary Reference Values for Food Energy and Nutrients for the United Kingdom. Report on Health and Social Subjects No. 41. Department of Health, London, HMSO, 1991.
- World Health Organization, United Nations University. Protein and amino acid requirements in human nutrition.Report of a joint FAO/WHO/UNU Expert Consultation; 2007 Dec 15.
- Shaw V, McCarthy H. Principles of Paediatric Dietetics: Nutritional Assessment, Dietary Requirements and Feed Supplementation. Clinical Paediatric Dietetics. 2020 Jul 14:1-7.
- RCPCH. 2012. UK-WHO growth charts - 2-18 years. [online]. Available from: https://www.rcpch.ac.uk/resources/uk-who-growth-charts-2-18-years
