Authors :
Presenting Author: Savannah Morris, MS, APRN, CPNP-PC, RN – Ann & Robert H. Lurie Children's Hospital of Chicago
Breanne Fisher, MSN, APRN-NP, CPNP – Ann & Robert H. Lurie Children's Hospital; Robyn Blackford, RD, LDN – Ann & Robert H. Lurie Children's Hospital of Chicago; Wesley Lowman, RD, LDN – Ann & Robert H. Lurie Children's Hospital; Priyamvada Tatachar, MBBS, MD, FAAN, FAAP – Ann & Robert H. Lurie Children's Hospital of Chicago
Rationale:
Ketogenic diet therapy (KDT) has established efficacy as an alternative treatment for intractable epilepsy. Common adverse effects may include gastrointestinal disturbance, elevated serum lipids, and metabolic acidosis which may impact treatment. There are limited current resources that establish tolerability of KDT as a long-term treatment option. This retrospective study aims to identify tolerability of long-term use of KDT in patients with epilepsy to contribute to the literature and identify changes in practice management for continuation of treatment.
Methods:
A retrospective chart review was performed to identify patients at a large urban pediatric institution treated with KDT for at least ten consecutive years. Age of patient, diagnosis, length on KDT, KDT ratio, seizure control, current supplements, most recent serum levels (serum beta-hydroxybutyrate [BHB], carbon dioxide [CO2], carnitine, non-fasting lipid profile), and known side effects were collected. Patients who were no longer followed at this institution or transferred to adult care at time of review were excluded.
Results: A total of 29 patients with greater than 10 years on KDT were identified (11 males [38%], 18 females [62%]) with a mean age of17.2 years (range 13-24). Average length on KDT was 13.5 years (range 11-20.) Primary diagnoses were intractable epilepsy (11/29 [38%]) and Lennox-Gastaut Syndrome (18/29 [62%]). Seizure frequency was reported as controlled (8/29), rare (6/29), less than once per month (2/29), 1-3 times per month (3/29), 1-6 times per week (2/29), 1-2 times per day (5/29), and 3-10 times per day (3/29). At time of review, the ratios ranged from 2.5:1 to 4.5:1 with 3:1 being the most common. The last drawn mean serum BHB was 2.97 mmol/L. The last drawn mean plasma free carnitine level was 35.73 umol/L with 23/29 (79%) of patients maintained on levocarnitine supplement. The last drawn mean plasma carbon dioxide (CO2) level was 23.69 mEq/L with 16/29 (55%) on citrate or bicarbonate supplement Multivitamin supplement was maintained in 13/29 (45%) of patients and 13/29 (45%) were on calcium with or without vitamin D supplement. No side effects were reported in 6/29(20%) of patients. There was history of renal calculi in 9/29 patients (31%). Constipation was reported in 20/29 (69%) with 18 patients on constipation aide. Other side effects included reflux (2/29 [7%]), and gastrointestinal disturbance (2/29 [7%]). Other supplements included probiotic (5/29), antacid (7/29), and erythromycin (3/29). The mean serum non-fasting lipid panel had total cholesterol of 184.62 mg/dL and total triglycerides of 187.17 mg/dL.
Conclusions:
Despite adverse effects experienced, KDT was continued due to perceived overall benefit. A retrospective study in our center indicates that KDT is an effective and safe intervention with minimal long-term risks in the pediatric population for patients with epilepsy. Evaluation of factors such as patient growth, cardiac, and bone health were not included in this review. Larger studies are warranted to further establish long-term tolerance of KDT.
Funding: None