@heal33
@pamelastewart5
Lost first post so fingers crossed.
I tagged Pamela Stewart above. She lives in Chicago and has a son who was/is taking Epidiolex.
Epidiolex does require you to obtain a prescription.
I understand it's at least somewhat effective about 40% of the time.
I’m not sure how one would go about finding a cooperative doctor Other than by calling around and asking Neurologists if they prescribe that medication.

Here is the website for Epidiolex,

Epilepsy Centers in or around Chicago click below link, type in Illinois and you can
zero in on Chicago.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/

When I lost the original post some info went too.
Jake

Epidiolex has been approved by the FDA so can be prescribed as per normal process.

My friends daughter had no benefit with CBD isolate medicine. The medicine she is administered has THC, THCA and THCN as prominent cannabinoids and has given her a quality of life that she had never known, she was actually discharged out from under the care of the Children’s Hospital neurology department, back to her local family doctor, because for the first time in her life, her seizures are under control.
She has now been on medicine with THC for seven years and she has not had any negative side-effects or impacts. When you take it regularly the intoxicating affect lessons more and more as your body gets used to it. The THCA is known to have anti-inflammatory properties so we’re not sure if this along with her general better health is responsible for her increased mobility, but for the first time in her life she is now pulling herself up to stand, trying to walk…… i’m not a warm fuzzy emotional kind of person but even that brought tears to my eyes ….

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.