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keeg1010 (@keeg1010)

Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: Sep 10, 2021 | Replies (62)

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@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

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Replies to "Hi Pam, Good Morning (@pamelastewart5) Indeed, medical marijuana or any medication made from it is very..."

Hello, Santosha and All,
Yes, Caleb's Epidiolex is pure CBD oil. When he took Medical Marijuana, it was full-spectrum oil. The coordinator at the Medical Marijuana Dispensary was very helpful and knowledgeable about doses. He was a licensed pharmacist. We increased the amount of daily oil until we had the best results. This was before marijuana was legal in Illinois. Our doctor gave us a prescription at our request, but she wasn't experienced in doses. She read up on it and also gave us leeway to work with the coordinator. He was great, and we were very fortunate to work with him! When Epidiolex became available, we switched to that with high hopes. As I said, it is not as effective as MM was for Caleb, but it still helps.
Our insurance is unfortunately very quick to deny meds and procedures. We get the Epidiolx from a regular pharmacy (CVS) and it is delivered to our home. Insurance pays with no major glitches so far. We no longer go to the dispensary and our helpful coordinator is no longer there. Now that marijuana is legal in Illinois, I believe there are many dispensaries. Some may be just for recreational marijuana.
Best wishes to you all,
Pam Stewart