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Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: Mar 22, 2023 | Replies (66)

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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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Replies to "Hi, I am Pam Stewart, mother of Caleb, who has had intractable seizures since age 3..."

Hi Pam, Good Morning (@pamelastewart5)
Indeed, medical marijuana or any medication made from it is very costly, here in Brazil as well. I hope that with the usage growth of cannabis, those medications will become cheaper!
In your post, you mentioned that your son Caleb has been taking Epidiolex for two years and that previously he was on medical marijuana which was working better.
I have just checked on Epidiolex, understanding this is a pure CBD oil. Am I correct? When you mentioned that he was taking medical marijuana before, I understand that Caleb was taking the full-spectrum oil with all components of cannabis, right?
I have started my cannabis treatment with full-spectrum oil with a low dosage of THC. However, my current doctor has told me that for epilepsy it is best to take just pure CBD oil, switching from full-spectrum to pure CBD oil. My seizures have increased a bit, but on the other hand, they became even softer and I am also feeling better.
I thank you if you could share your experience with me. I have read some other participants on our group saying that full-spectrum works better than pure CBD oil, asking myself why my doctor has said that pure CBD works best for people with epilepsy.
I hope you can get your son’s medication covered by your insurance soon. I am also fighting for it here with my insurance.
I thank you in advance for your attention.