Adjunctive Everolimus (RAD 001) Therapy for Epilepsy in Children With Sturge-Weber Syndrome (SWS)

The main study part has 3 phases. The first phase is called the baseline phase and consists of 1-2 study site visit(s). During this phase, the investigators will gather information about the subject, his/her medical history, and current health. During the second phase of the study, the subject will start taking the study drug. It will take approximately 4 weeks to find out the right amount of study drug the subject should be taking. This process is called the titration phase. There will be 2 visits during the titration phase. Once the subject are on the right amount of study drug, he/she will take that dose for about 12 weeks. This phase is called the maintenance phase and consists of 3 study site visits. At the end of the maintenance phase, if the study doctor determines that taking everolimus has helped to reduce the number of seizures the subject has, he/she will have the choice to continue taking the study drug for an extended time. There will be 4 total study site visits during the extension phase. Study assessments: 1. Medical History: A detailed medical history will be given and the subject's medical record will be reviewed by the study team to verify inclusion and exclusion criteria. 2. Vital Signs: Weight, height, blood pressure, pulse rate, and body temperature, will be recorded. 3. Physical Exam: A standard physical examination will be performed at baseline, week 4, 16, and month 6 and 12 of extension visits. 4. Neurological Exam: A standard neurological examination will be performed at baseline, week 4, 16, and month 6 and 12 of extension visits. 5. Dermatological Exam: A skin examination will be performed to assess the presence and characteristics of Port-wine stain birthmarks. 6. Ophthalmologic Exam: An eye examination will be performed to evaluate for the presence of glaucoma. Visual acuity, tonometry, and visual fields will be assessed. 7. Safety Laboratory Assessments: Safety laboratory assessments will be performed at baseline, week 4, week 8, week 16, and every 3 months thereafter in the extension phase of the study. 8. Pregnancy testing: For females of child-bearing potential, serum pregnancy will be performed at screening and at every visit where safety laboratory assessments are being done. 9. Antiepileptic Drug (AED) Concentrations: AED levels specific to each subject will be performed at baseline, week 2, week 4, week 8, week 16, and every 3 months thereafter in the extension phase of the study. This test is done to determine the blood level of other anti-epileptic drugs the participant may be taking. 10. Everolimus Concentrations: Everolimus levels will be performed after the start of study medication at week 2, week 4, week 8, week 16, and every 3 months thereafter in the extension phase of the study. This test is done to determine the dose level of the study drug that will be given at each visit.