Rapid detox of cannabis medicine to treat refractory epilepsy

@lhoward
Good morning
I believe since marijuana can be addicting in some it would be essential to consult a physician. What type of toxic symptoms is your child having?
Do you give your child THC and/or CBD? Which preparation of cannabis do you use?
Have you tried the FDA approved CBD medication Epidiolex for Epilepsy? I understand it costs around $32,000 a year although a couple members here have contacted the manufacturer and received it for very reasonable co-pays.
Hear is an Epidiolex thread on Connect
https://connect.mayoclinic.org/search/?search=Epidiolex
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/
Best of luck,
Jake

She was under the care of palleative care, every type of treatment had failed - she was dying.
Epidiolex is ineffective.
The Aust equivalent of the FDA know my friend makes her daughters medicine at Homs herself, they have had it tested and searched the world for a legally produced matching product but it does not exist. The Federal Health Minister, Police and Drs support her being given full extract cannabis medicine as
THC is significantly safer than the other 19 meds she was prescribed- concurrently- like Oxycodine, Oxycotin, Lyrica, Keppra, Diazepam, Valium…..

She is now thriving - she was discharged out of palleative care 18 months ago …. As she is no longer dying …..

THC is not toxic, nor is there any scientific proof it’s harmful. It’s stops her seizures in seconds Vs cardiac and respiratory distress, priority 1 ambulance emergency call, administered Medazolam, intubation & life support which it took previously to stop them.

thank you

Hi @lhoward, Good Afternoon
I take pure CBD 200 mg/ml (Purodiol – Farma USA) together with a low dosage of carbamazepine to treat my epilepsy (also refractory). I feel much better with CBD than with AEDs (I could not tolerate the side effects and/or did not control my seizures). Though I am not yet seizure-free, I am living again and much better off with my current CBD treatment than with the five previous ones (Lamotrigine, Oxcarbazepine, Lacosamide, Gabapentin, and Carbamazepine) I have tried.
When I have a seizure I take a rescue spray of CBD together with THC. It immediately interrupts my seizure. I have shared this experience here at Mayo Connect some months ago.
If I can be of any help, let me know.
All the best!
Santosha

Yes!!
When my friends daughter starts to have a seizure, she runs a pea size amount of concentrated cannabis medicine (which is like a thick, dark paste) on her daughters gum’s, and her seizure immediately stops and doesn’t go into full tonic clonic seizure…

Her daughter is non verbal - you are the first person I have ever heard actually speak about their own experience, using cannabis medicine …….. I’m so excited to make contact with you Santosha!

May I ask, is the medicine you use prescribed by a Dr or is it privately made?

The children’s hospital in Brisbane (where my friend lives) refuses to acknowledge this medicine with THC works (many of the doctors do but the hospital executive and state health Dept refuse to) so every time she has to go to hospital, they threaten to stop her being administered it.
As she takes a more diluted version of the medicine everyday (which has dramatically reduced frequency of seizures) if they were to prevent her being given it, it would cause her to go into a rapid detox which we have been advised could be fatal in itself.

But the biggest issue is, she is allergic to Gabapentin and Medazolam, so if she has a big seizure and is prevented from having cannabis medicine, and Keppra doesn’t stop it (it has only worked 50% of time) she could become status epileptus and she could die……

So - long story short; I’m trying to find any studies or anything formally documented that shows that THC does work to stop seizures and also, the same kind of documented information stating rapid detox a child off cannabis med is dangerous …….

Hi @lhoward, Good Morning
Thank you for your reply. I am also excited to make contact with you and others experiencing treatment with CBD. I am very happy to hear that your friend's daughter is doing better with medical cannabis!!! As I mentioned in my recent posts to @keeg1010, my treatment with CBD has been giving me new hope 🙂 🙂 :-). There, I have shared my experiences with medical cannabis. Have a look!
The CBD I take is imported from the United States. It is Purodiol from Farma USA. Here in Brazil you can only buy or import medical marijuana through a doctor’s prescription. Recreational marijuana is not approved.
My treatment with medical cannabis in August 2020 started with a full-spectrum artisanal one (with a low dosage of THC and other medical cannabis components). This medication I bought from a local association (called ABRACE), one of the very few ones that can produce medical cannabis in Brazil. In May 2021 I started seeing an epileptologist and he changed it to pure CBD, prescribing Purodiol 200 mg. He says that THC is not the best for people with epilepsy. As I have mentioned in my other posts to @keeg1010, I feel better with pure CBD compared to full-spectrum medical cannabis. My rescue nasal spray, however, contains THC.
Based on my treatment experience, the introduction, as well as the withdrawal of CBD, has to be done slowly. I understand that the detox of an AED has also to be done carefully and is also not rapid.
Regarding studies and articles, have you checked at the Epilepsy Foundation?
Sad to hear that this children’s hospital you have mentioned does not acknowledge that the THC works for your friend's daughter and many others, like me. There is still much to be studied and discovered about epilepsy and alternative medication/treatments. For example, recent studies have shown a correlation between some types of epilepsy and the gut, but little is still known yet about the reasons for it.
Let’s hope more and more is studied about CBD/medical cannabis and other alternative treatments!