Hi, I am Pam Stewart, mother of Caleb, who has had intractable seizures since age 3 and is now 43. We live in Chicago. Caleb has been on many meds over the years and tried many diets, treatments, etc.. He has been on Epidiolex for over 2 years. His neurologist prescribed it at our request. She is semi-retired and has only a few longtime patients now. She had recently diagnosed him as having Lennox-Gesault Syndrome based on his symptoms. His EEG, normal for years, is now slow and disorganized. Before Epidiolex, he was on Medical Marijuana. This helped him have fewer seizures (down from 4-6 per week to 1-2 per week) and to be more alert. However, our insurance did not cover MM and it was costing us almost $1000,00 per month out of pocket, which was very hard for us to afford. Epidiolex is covered by insurance for some diagnoses, and Lennox-Gesault is one of the covered ones. We had to fight for coverage in spite of his qualifying diagnosis. Epidiolex is very costly without insurance. It does not work as well as MM did for Caleb. Though the number of seizures has not markedly increased, he is less alert and less able to bear weight. Of course his decline may be due to the progress of his disease. No one knows. He started as a normal 3 year old who had 1 isolated tonic-clonic seizure. No cause has ever been found. Thank you, and best wishes and sincere prayers to all of you.

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