A child on the Ketogenic Diet requires regular review by the treating Neurologist and Dietitian to monitor seizure activity, the development of possible side-effects, tolerance of the diet, fluid intake, and evaluation of growth parameters. Typically the child will be reviewed every 3 months after discharge. Infants under 12 months will require more frequent review.1
The following parameters will need to be assessed initially and monitored over time:
Suggested initial and regular blood testing:
- Full blood count with platelets (looking for: anaemia; thrombocytopenia; evidence of iron, folate, or vitamin B deficiency)
- Electrolytes and renal function (looking for low HCO3, low Ca, and low Mg)
- Serum liver function tests, including albumin, AST, ALT, blood urea, nitrogen, (looking for evidence of transaminitis and low albumin)
- Fasting glucose (looking for hypoglycaemia)
- Fasting lipid profile (looking for elevated triglycerides and cholesterol)
- Selenium, Zinc, 25 OH Vitamin D, Vitamin B12, Folate, Iron (looking for deficiencies of these as the KD is very low in these micronutrients)
- Serum β-hydroxybutyrate (if the level is already high the KD may be contraindicated)
- Anticonvulsant levels (if applicable)
- Total and free carnitine, serum acylcarnitine profile (screen for inborn errors of metabolism or carnitine deficiency), and plasma amino acids (looking for protein deficiency). Before ordering these metabolic tests, please note that they are very expensive if ordered externally (i.e. outside of the hospital setting). Where possible, they should be conducted within the hospital setting to avoid prohibitive costs for the family.
Renal health and suggested urine testing:
The Ketogenic Diet places patients at risk of renal stones and elevated calcium secretion. Initial and ongoing urine monitoring should include:
- Urinalysis (to check for proteinuria and elevated ketonuria)
- Urine Ca/Cr ratio, Urine Citrate/Cr ratio (looking for nephrocalcinosis)
- For guidance on minimising Calculi risk, refer to a renal physician.
Medications and vitamin and mineral supplementation:
- It is essential that any newly prescribed medications or vitamin and mineral supplements are sugar-free (or contain minimal carbohydrate content).
- Sudden introduction of carbohydrates while on the diet in any form may induce seizures.
- This applies to all medications including pain relief and antibiotics (e.g. syrups may need to be changed to sugar-free syrups or to crushable tablets).
Dietary review / nutrition assessment:
- It will be necessary to liaise regularly with the Dietitian regarding diet and growth parameters.
- The Dietitian will conduct a full nutrition assessment at every clinic review (including diet record analysis, appropriateness of diet, growth review, micronutrient bloods, supplementation requirements, compliance with diet, knowledge of diet and provision of education).
- Fine-tuning or modification of the diet is possible to increase ketosis.
- The Dietitian needs to be notified when there is a change of medication, as the carbohydrate content needs to be factored into the diet.
- 1Kossoff et al. (2018). Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group. Epilepsia Open, 3(2):175–192.