1. < Epilepsy & Seizures

Seizures/how to dose CBD/medical marijuana

Posted by keeg1010 @keeg1010, Aug 9, 2021

Hi. My son has cerebral palsy, autism, and recently developed seizures. His neurologist increased his lamotrigine but wants him to start cbd/medical marijuana. I had an appt to get his medical marijuana card but cancelled because they told me the doctor only approves the card and does not go over dosing. He is 23, 190lbs. We are in the process of weaning him off his Buspar (he took 45mg twice a day) and he's down to 15mg once daily for this week and then we stop. I did try a CBD gummy a while back (5mg) but I think it was too much on top of the Buspar and Abilify he takes. How do I know what dose to try and do I try just CBD or THC or both?

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alla1967alla | @alla1967alla | Aug 24, 2021
In reply to @santosha "Hi Alla (@alla1967alla) Just out of curiosity, do you know what kind of cannabis oil this..." + (show)
@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

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Just wanted to share these pages from this book that I have. Hope it’s readable. 💕
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2 replies
Chris Gautier OR Santosha | @santosha | Aug 24, 2021
In reply to @alla1967alla "Hello Santosha, She said that it is pure CBD and I am waiting for their reply..." + (show)
@alla1967alla

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

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@alla1967alla
Thank you so much Alla!
Santosha

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Chris Gautier OR Santosha | @santosha | Aug 24, 2021
In reply to @alla1967alla "Just wanted to share these pages from this book that I have. Hope it’s readable. 💕" + (show)
@alla1967alla

Just wanted to share these pages from this book that I have. Hope it’s readable. 💕

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@alla1967alla
Great!!! It is perfectly readable, I will read it at the end of my day.
Thank you so much for sharing this 🙂
Santosha

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Chris Gautier OR Santosha | @santosha | Aug 24, 2021
In reply to @alla1967alla "Just wanted to share these pages from this book that I have. Hope it’s readable. 💕" + (show)
@alla1967alla

Just wanted to share these pages from this book that I have. Hope it’s readable. 💕

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keeg1010
Hi Kerry!
Have a look at this material @alla1967alla has shared, including dosage. The information might be useful for you.
Santosha

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pamelastewart5 | @pamelastewart5 | Aug 26, 2021
In reply to @santosha "Hi Pam, Good Morning (@pamelastewart5) Indeed, medical marijuana or any medication made from it is very..." + (show)
@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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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

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Chris Gautier OR Santosha | @santosha | Aug 28, 2021

@pamelastewart5
Hi Pam, Good Evening
Thank you so much for sharing this. I will try to understand why my epileptologist is not in favor of full-spectrum marijuana for epilepsy in my next appointment with him. I will share it afterward with our group.
Are you thinking of switching Caleb back to marijuana full-spectrum? Now that it is legal in your place, I understand that the insurance can not deny it. Here in Brazil, this medication is still not covered by health insurance, hope this changes soon!
Have a nice weekend and best wishes,
Santosha

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1 reply
pamelastewart5 | @pamelastewart5 | Sep 1, 2021
In reply to @santosha "@pamelastewart5 Hi Pam, Good Evening Thank you so much for sharing this. I will try to..." + (show)
@santosha

@pamelastewart5
Hi Pam, Good Evening
Thank you so much for sharing this. I will try to understand why my epileptologist is not in favor of full-spectrum marijuana for epilepsy in my next appointment with him. I will share it afterward with our group.
Are you thinking of switching Caleb back to marijuana full-spectrum? Now that it is legal in your place, I understand that the insurance can not deny it. Here in Brazil, this medication is still not covered by health insurance, hope this changes soon!
Have a nice weekend and best wishes,
Santosha

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Hello, Santosha and Everyone,
We would dearly love to switch Caleb back to Medical Marijuana, which helped him more than Epidiolex (seizure frequency is not much different, but on MM he was more alert and could bear weight) but all marijuana, though legal in our state, Illinois, is NOT federally legal, which means insurance won't cover it (my husband has repeatedly checked). It is hard to get Caleb in and out of the car when I pick him up from his day program, so I am hoping for some way to improve his weight bearing. He is not heavy--about 140 lbs and 5"8' tall--but he is still hard to lift/move.
Sorry for the complaints. I believe this will work out sooner or later.
Best wishes to Everyone.
Pam Stewart

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2 replies
pamelastewart5 | @pamelastewart5 | Sep 3, 2021
In reply to @pamelastewart5 "Hello, Santosha and Everyone, We would dearly love to switch Caleb back to Medical Marijuana, which..." + (show)
@pamelastewart5

Hello, Santosha and Everyone,
We would dearly love to switch Caleb back to Medical Marijuana, which helped him more than Epidiolex (seizure frequency is not much different, but on MM he was more alert and could bear weight) but all marijuana, though legal in our state, Illinois, is NOT federally legal, which means insurance won't cover it (my husband has repeatedly checked). It is hard to get Caleb in and out of the car when I pick him up from his day program, so I am hoping for some way to improve his weight bearing. He is not heavy--about 140 lbs and 5"8' tall--but he is still hard to lift/move.
Sorry for the complaints. I believe this will work out sooner or later.
Best wishes to Everyone.
Pam Stewart

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Hello, Everyone,
FYI: There is a free neuro mag called BRAIN AND LIFE. I discovered it many years ago while waiting in Caleb's neurologist's office. I get a hard copy through the mail and also the e-mail version.It has lots of ads (which is why it's free), but also very good articles on various neuro problems, including epilepsy. I believe that the e-mail address is: BrainandLife. org. and that the phone number for subscriptions is: 1-800-422-2681.
Best wishes!
Pam Stewart

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2 replies
Chris Gautier OR Santosha | @santosha | Sep 4, 2021
In reply to @pamelastewart5 "Hello, Santosha and Everyone, We would dearly love to switch Caleb back to Medical Marijuana, which..." + (show)
@pamelastewart5

Hello, Santosha and Everyone,
We would dearly love to switch Caleb back to Medical Marijuana, which helped him more than Epidiolex (seizure frequency is not much different, but on MM he was more alert and could bear weight) but all marijuana, though legal in our state, Illinois, is NOT federally legal, which means insurance won't cover it (my husband has repeatedly checked). It is hard to get Caleb in and out of the car when I pick him up from his day program, so I am hoping for some way to improve his weight bearing. He is not heavy--about 140 lbs and 5"8' tall--but he is still hard to lift/move.
Sorry for the complaints. I believe this will work out sooner or later.
Best wishes to Everyone.
Pam Stewart

Jump to this post

@pamelastewart5
Hi Pam,
I understand your frustrations regarding the not recognition of medical marijuana by insurances and also by some doctors. It is the same over here in Brazil. I know that medical marijuana needs additional researches. But when you are in a situation like yours or mine in which you have already tried approved medication without good results, you are willing to take some risks. I better live less but with more life quality than longer but with little life quality. Here in Brazil, there is also a strong lobby of the pharma companies against medical marijuana and its growing use. That is why we still have very few local MM available, the best options are imported.
Best wishes!
Santosha

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Chris Gautier OR Santosha | @santosha | Sep 4, 2021
In reply to @pamelastewart5 "Hello, Everyone, FYI: There is a free neuro mag called BRAIN AND LIFE. I discovered it..." + (show)
@pamelastewart5

Hello, Everyone,
FYI: There is a free neuro mag called BRAIN AND LIFE. I discovered it many years ago while waiting in Caleb's neurologist's office. I get a hard copy through the mail and also the e-mail version.It has lots of ads (which is why it's free), but also very good articles on various neuro problems, including epilepsy. I believe that the e-mail address is: BrainandLife. org. and that the phone number for subscriptions is: 1-800-422-2681.
Best wishes!
Pam Stewart

Jump to this post

@pamelastewart5
Interesting Pam, thanks for sharing that with us :-)! I will look at it.
Wishing you all a nice weekend
Santosha

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