Seizures/how to dose CBD/medical marijuana

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.

Hello Kerry, a neurologist based at the University of Saskatchewan, Saskatoon , Canada has been doing trials and research on CBD/ THC children’s epilepsy treatment and maybe they can help you with the dosages. Dr Richard Hundsman. All the best!
Hugs,
Alla

Hi Alla,
Thanks so much for the information! I will definitely look into Dr. Hundsman. I know that both CBD/THC are used widely here in Arizona for seizures, migraines, herniated discs, etc. I'm just trying to get in touch with the doctor that's is in my son's neurology office and does the medical certification to see if she has dosing guidelines and/or if she will give my son a prescription. You wouldn't think that would be a challenge but it's turned out to be.
Hope you are well!
Kerry

Hello Kerry
Wow, I had no idea that Arizona has such a wide use of CBD. That’s good.
Hope you and your son get guidance from your neurologist.
Our daughter had asked hers about CBD/THC and basically was told that if you want to Try it, go ahead, but you are on your own. And I feel that neurologist should take part in this treatment.
Take care!!
Alla

Hi @alla1967alla
I agree with you, the neurologist | epileptologist should take part in the treatment with CBD/THC. Do you know if the doctor of your daughter has experience in treating patients with CBD/THC? I myself have received such answers as you did because of the doctor’s lack of experience with CBD/THC.
All the best!
Santosha

Hello Santosha,
Perhaps Our neurologist doesn’t have any experience, or time to do research. I don’t really know. But I talked to someone today whose mother had been having seizures her whole life, daily. She is on many meds and lately started taking CBD oil which softened her seizures. Her neurologist had given her guidance in CBD dosages to this women and it is helping her very much according to her daughter.
This is in another province, and for that reason my daughter can’t see this doctor, but I do have hope that we will find something here, in Saskatchewan.
I wish you all the best as well, alla

Hi Alla (@alla1967alla)!
Great to know that, thanks for sharing! I am having the same experience as this mother, my seizures have become softer with the medical marijuana treatment. Before, when I had a seizure, my day was over. Nowadays, when I have a seizure, I still feel it, but it does not stop my day as before. I rest a bit and then retake my activities.
A virtual appointment with the doctor/neurologist of this mother would not be an alternative for you and your daughter? I myself have virtual medical appointments whenever it is possible because of the pandemic here in São Paulo/Brazil. Doctors over here have become quite flexible in this respect. I understand that a neurologist does not need to see the patient in person to give guidance in medical marijuana treatment. Or perhaps the neurologist of this mother could refer you and your daugther to a neurologist with medical marijuana experience in your region? I have just looked on the internet if there is a site of an association of medical marijuana doctors and have discovered a site that helps you find a doctor with medical marijuana treatment experience: marijuanadoctors.com. Perhaps there are other sites like that?
Have a nice week!
Santosha

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.
Santosha

Hi Alla (@alla1967alla)
Just out of curiosity, do you know what kind of cannabis oil this mother has been taking? Is it pure CBD oil or full-spectrum cannabis oil?
Thank you!
Santosha

Hello Santosha,
She said that it is pure CBD and I am waiting for their reply with more info about it. I will write back to you when I hear from her.
Thank you!! Alla