The rigors of ketogenic diet management should be discussed during the pre-keto-genic diet session. The process of food preparation and food weighing should be explained. The caregiver should be provided with the information for purchasing a scale that weighs in tenths of a gram (0.1 g). A description of the typical meals and beverages, and the requirement for the omission of carbohydrate-rich foods, should be clearly communicated. The caregiver should be informed about the appropriate foods and nutritional supplements that must accompany the diet. The follow-up appointments required to monitor the diet safely should be reviewed. The caregiver should understand the possible adverse effects of the diet, including constipation, kidney stones, and difficulty with compliance (particularly with older children). The expected length of keto-genic diet therapy should also be reviewed in this session.
Eating is an activity that is highly celebrated in our society with every holiday and major event. The caregiver should be aware of the impact that food restriction may have on child and family alike and should be willing to discuss alternative ways to enjoy these events. The caregiver who understands the ketogenic diet and is motivated to adjust to the demands of this therapy will find the diet a worthwhile endeavor. Disorganized or unreliable families will find the diet difficult and may jeopardize the seizure control and health of an individual if the diet is poorly managed. Single-parent households and children in child-care and institutional settings have had positive experiences with the diet; therefore, these settings should not be considered to be contraindications to utilizing the ketogenic diet.
A nutrition assessment of the candidate should be completed before the ketogenic diet is initiated. Information regarding growth history, dietary practices, and chewing or swallowing difficulties should be reviewed. Feeding difficulties such as gastrointestinal reflux may need to be resolved prior to ketogenic diet therapy.
Baseline laboratory collected to determine nutritional status and to establish a reference point for follow-up nutrition and neurologic evaluations should include a complete blood count, chemistry or endocrine panel, electrolytes, lipids, serum carnitine levels, and antiepileptic drug levels. If not previously completed, metabolic studies for disorders in fatty acid oxidation and mitochondrial function should be included at this evaluation.
A pre-ketogenic diet history intake form can assist in collecting data for the nutrition assessment and planning a safe and well-tolerated ketogenic diet (see Appendix 1 in this chapter). The ketogenic diet should be individualized to the special needs of the child. A growth chart should be initiated and monitored during the course of ketogenic diet therapy.
Food allergies, intolerances, and cultural and religious preferences require special consideration and may necessitate adjustments in the diet. Information regarding current medications and nutritional supplements is needed to determine appropriateness to the diet. Medications and supplements in suspension, syrup, elixirs, and chewable-tablet forms generally contain concentrated sources of carbohydrate, and alternatives should be used. A 3-d food diary is also recommended prior to ketogenic diet initiation to determine the child's dietary practices, food preferences, and method of nutritional intake. The ketogenic diet can be formulated for oral intake, enteral intake, or a combination of these methods.
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